Wednesday, February 28, 2007
CUPE Local 2745, the union representing about 3,000 educational and clerical support staff in New Brunswick, including teacher assistants (TA's), has reached a tentative agreement with the Province of New Brunswick. No details are expected to be released until after a late March ratification vote. Local president Sandy Harding has stated that the tentative agreement brings improvements for their members on issues such as guaranteed hours of work and weeks of employment. Many autistic school children need the help of teacher assistants to learn, even to cope and attend school in safety.
The traditional collective bargaining model is an employer-employee-union model. It does not provide for direct participation by those representing the interests affected by the results of bargaining - in this case children, including autistic children, with whom the TA's work. Parents and advocates for autistic school children must lobby perpetually with both government and union in order to have their children's interests taken into account in collective bargaining.
Historically a number of collective agreement issues have caused difficulty for New Brunswick's autistic students. One is the lack of autism specific training for TA's assigned to work with autistic students. CUPE historically has shown no interest in fighting for such training for its members despite overtures from the Autism Society New Brunswick. Given the solid commitment by Premier Graham and Education Minister Lamrock to provide autism specific training to TA's at the UNC-CEL Autism Intervention Training program this issue should not be problem under the new agreement.
Hopefully the new collective agreement will address problems which have arisen in some cases from use of seniority rights. By means of seniority some TA's, lacking training or experience with autism, have for personal reasons, bumped more junior, better trained TA's even where the TA had developed a working relationship with an autistic student. In other cases autism trained TA's with seniority have used their seniority to seek a post working with a non-autistic child. "Bumping day", when positions are re-assigned on the basis of seniority, takes place shortly after the start of the school year leaving no opportunity for planning for an autistic child's school year.
Many of these problems were admittedly reduced by use of clauses permitting the Department of Education to prevent a TA from being bumped by a more senior TA in special circumstances and by the cooperation of many TA's who put the childrens' interests first. But problems have arisen often and when it is your child who is affected by loss of a TA with autism training, or experience working with your child, solely on the basis of seniority it can be very unsettling. Hopefully these issues have been addressed, and the childrens' interests better protected, in the new collective agreement.
The Department of Education has also been remiss in allowing District Superintendents to unofficially cap the hours of TA's working with children. If an autistic child is fortunate enough to have an autism trained, experienced TA the TA is still not permitted to work the full day with the child in many districts. The hours are capped in order to prevent the TA, from acquiring full employee status, and benefits, under the relevant legislation and agreements. Hopefully this issue too has been addressed in the new collective agreement. The TA's are valuable players in the education of autistic children in New Brunswick schools. They deserve the status, income and benefits that reflect the important role they play in educating autistic children. and the children deserve to have available properly trained personnel working with them.
In the absence of solid information we can only wait until the ratification of the agreement at the end of March. Hopefully these issues have all been resolved. The TA's work with children with special needs. Education Minister Lamrock has made it very clear that he will not let adult interests interfere with the best interests of children. That should mean some good news for autistic children in the new CUPE collective agreement.
Tuesday, February 27, 2007
I have personally never been a believer in possible alleged mercury (thimerosal) autism link. Primarily because I accept the overwhelming consensus in the world scientific community that there is no link. Second, because I don't believe in the conspiracy angle of those who postulate a mercury autism link. Third, for personal reasons, my son displayed unusual behavior, which we have documented in a large photograph collection, since birth. None the less I think that Michael Wagnitz has made a very interesting argument for the mercury vaccine connection. Mr. Wagnitz is a chemist with 20 years experience working trace metal analysis who argues that recent findings of clinical studies examining brain tissue, blood, urine and human cells make a strong case for thimerosal as the agent causing the neuroinflammation which has been found in the brains of deceased autistic persons. The following article in the Madison Wisconsin Capital Times is worth a read. It will be interesting to read critiques of Mr. Wagnitz' theory but for now at least maybe it is worth waiting for more study before writing off the mercury-autism link.
Michael Wagnitz: Research supports mercury-autism link
By Michael Wagnitz
It was reported repeatedly in 2006 that the link between mercury-containing vaccines and autism has been disproven. Yet if one looks at the most recent research coming from some of our major universities, one may draw the opposite conclusion.
What we have learned in the last couple of years is that the underlying medical condition of autism is neuroinflammatory disease. In a study conducted at John Hopkins University, brain tissue from deceased autistic patients was examined. The tissue showed an active neuroinflammatory process and marked activation of microglia cells. Neuroinflammatory disease is synonymous with an activation of microglia cells.
A study done at the University of Washington showed that baby primates exposed to injected thimerosal (50 percent mercury), at a rate equal to the 1990s childhood vaccine schedule, retained twice as much inorganic mercury in their brains as primates exposed to equal amounts of ingested methylmercury. We know from autometallographic determination that inorganic mercury present in the brain, following the dealkylation of organic mercury, is the toxic agent responsible for changes in the microglial population and leads to neuroinflammation.
Recently it was shown that in more than 250 examined patients, atypical urinary porphyrins were almost three times higher in autistic patients than controls. Porphyrins are precursors to heme, the oxygen-carrying component of blood. Mercury inhibits the conversion of porphyrins to heme. When the patients were treated to remove mercury, urinary porphyrins returned to normal levels.
In a study done at the University of Arkansas, autistic children were found to have significantly lower levels of the antioxidant glutathione. Glutathione is the major antioxidant needed for the elimination of mercury at the cellular level. This may explain why some children are more severely affected by thimerosal in vaccines than others.
While all the government-conducted epidemiological (statistical) studies show no link between thimerosal and autism, the clinical studies examining brain tissue, blood, urine and human cells show a completely different picture.
Michael Wagnitz is a Madison resident with more than 20 years of experience as a chemist working with trace metal analysis.
Published: February 27, 2007
The following article from the Psychiatric Times gives a good, digestible, overview of some of the autism studies currently being conducted even as the Combating Autism Act spurs more research.
New Act by Congress Gives Boost to Autism Research
By Arline Kaplan
February 2007, Vol. XXIV, No. 2
The passage and signing in December of the Combating Autism Act (S. 843), which authorizes $945 million over 5 years for research, screening, intervention, and education on autism spectrum disorders (ASD) and developmental disabilities, has been hailed by the advocacy group Cure Autism Now (CAN) as a “federal declaration of war on the epidemic of autism,” a disorder that affects 1 in 166 children. 1 Yet, some battles are already under way at NIMH's Intramural Research Program, with patient recruitment proceeding for 3 major autism studies.
In a press statement, Jonathan Shestack, father of an autistic child and cofounder of CAN, a large private funding organization for autism research, said S. 843 (now Public Law 109-416) “creates a congressionally mandated road map for a federal assault on autism, including requirements for strategic planning, budget transparency, congressional oversight, and a substantial role for parents of children with autism in the federal decision-making process.”
Key provisions of the law, subject to the availability of appropriations, call for the following:
* Expanded research on ASD, including basic and clinical research in such fields as pathology, developmental neurobiology, genetics, pharmacology, nutrition, immunology, neurobehavioral development, and toxicology.
* The CDC to increase and update its efforts to monitor autism incidence and prevalence around the country and to support the establishment of regional Centers of Excellence in the epidemiology of ASDs and other developmental disabilities.
* Development of a curriculum for continuing education to assist in recognizing the need for valid and reliable screening tools and in using those tools.
* Early screening of individuals at higher risk for ASD and other developmental disabilities.
* Congressional oversight of the Autism Centers of Excellence.
* Expansion and reauthorization of the Interagency Autism Coordinating Committee, composed of relevant government officials, experts, families of those with ASD, and at least one individual who has ASD.
The NIMH studies on the NIH campus in Bethesda, Md, are the first products of a new, integrated focus on autism. One study, “Clinical and Immunological Investigations of Sub-types of Autism,” seeks to learn more about autism and its subtypes. “It is actually two studies in one,” said Susan Swedo, MD, chief of NIMH's Pediatrics and Developmental Neuropsychiatry Branch.
The first is a study of regressive versus nonregressive autism to determine whether there is an immune or other systemic trigger of children's neurologic regression, she said. It involves 50 children with idiopathic autism and regression, 50 children with idiopathic autism and no history of regression, 25 children with Rett syndrome, and 50 healthy children. The age range of all 4 groups is between 12 months and 48 months at first visit.
The second component to the study, Swedo said, is part of the Autism Phenome Project, a pilot investigation being conducted in collaboration with David Amaral, PhD, Beneto Foundation Professor and director of research at the M.I.N.D. Institute at the University of California, Davis. Between the 2 sites, the pilot phase of the phenome study involves 50 to 100 children with autism, 50 children with developmental delays, and 50 to 100 children without disorders. The purpose is to identify clinically meaningful subtypes of autism, which could lead to better understanding of the etiology and pathophysiology of the disorder.
Increasingly, researchers are considering that autism may be multiple disorders. The regressive subtype is well characterized, Swedo said, although there is some debate about how common it is. The reports vary from indicating that as few as 10% to as many as 40% of children with autism have a pattern of regression.
With regressive autism, Swedo explained, you have a history of the child developing typically until age 12 to 18 months with appropriate development of language and social skills and then the child loses words and social skills and begins to look indistinguishable from children who have had autistic symptoms from birth or early on.“Some investigators have found that the regressive subtype actually has a worse prognosis,” she said.
To explain the regression, Swedo said that the research team's working hypothesis is that there are environmental triggers or perhaps genetic aberrations that are expressed at this particular point in the child's development. One possibility based on Swedo's work with obsessive-compulsive disorder and the pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections subgroup is that regressive autism develops following a viral or bacterial infection that triggers an autoimmune response and neuropsychiatric symptoms.
The phenome study includes questions related to a child's exposure to environmental toxins and household products; neuroimaging (structural MRI); and biomarkers; as well as very careful behavioral, neurologic (eg, via electroencephalograms administered while the child sleeps in the hospital overnight), and physical assessments. “The children will be monitored every 6 months to a year until they are age 5, and then intermittently after that time” to examine the validity of their diagnosis and how their symptom course evolves over time, Swedo added.
In another small-scale intramural study, Treatment of Childhood Regressive Autism With Minocycline: An Anti-Inflammatory Agent Active Within the CNS, NIMH researchers are examining the use of the antibiotic minocycline (Dynacin, Minocin, Myrac) in children aged 3 to 12 years with regressive autism.
“We are using minocycline, a tetracycline derivative, not for its effectiveness as an antibiotic but rather for its ability to modulate the immune system,” Swedo said. “It has fairly specific effects on NF-kappa B and therefore inhibits the initiation of the cascade that leads to inflammation. Published data from the Johns Hopkins group [2,3] demonstrate that brains of individuals with autism have evidence of chronic neuroinflammation. We hope that by stopping that process, the children will be able to recover some of their skills. We are conducting an open-label trial in 10 children and are accepting referrals. If the results are encouraging, we will do a placebo-controlled trial in a larger cohort of subjects.”
Asked about other pharmacologic approaches being investigated at NIMH, Swedo responded, “We have a few in [the] pipeline, but it is premature to talk about them. Eric Hollander, MD, has been doing some work with oxytocin, reported at the American College of Neuropsychopharmacology's annual meeting.”
Hollander, chairman of psychiatry at the Mt Sinai School of Medicine in New York and director of the Seaver and New York Autism Center of Exellence, and Jennifer Bartz, PhD, found that pitocin (synthetic oxytocin), administered intravenously or nasally, may have significant positive effects in adults with autism. Oxytocin, a hormone that is best known for activity during birth and lactation, is also a brain neurotransmitter involved in social recognition and bonding.
The third NIMH study, “Mercury Chelation to Treat Autism,” seeks to address whether chelation therapy can be helpful for autism. The chelation study is a placebo-controlled trial that involves use of meso-2,3-dimercaptosuccinic acid (DMSA, succimer), an orally adminstered chelating agent that binds to all metals including mercury and lead but also to some beneficial metals, such as zinc and iron, according to Swedo. DMSA is commonly used to treat autism, with some surveys estimating that 1 in 12 children with autism has undergone chelation, although it has never been tested in a controlled study and there is no proof that it helps children with the disorder. Support for its use is based on single-case reports of benefits of chelation with DMSA.
Children aged 4 to 10 years in whom autism, Asperger disorder, or pervasive child developmental disorders have been diagnosed; who weigh at least 33 lb; who have detectable, but not toxic, levels of mercury or lead in the blood; and who have not previously received chelation therapy may be eligible for this study.
“The chelation study is based on the hypothesis that mercury toxicity is responsible for at least some cases of autism,” Swedo said. She explained that extensive controversy surrounds the issue of mercury toxicity in autism. The Institute of Medicine (IOM) conducted a comprehensive study of the question of whether thimerosal, an ethylmercury-based compound used previously in the United States as a vaccine preservative for routine childhood immunizations, contributed to the apparent increase in the prevalence of ASDs. 4 The IOM panel concluded that there was no evidence for an association, but the report has been dismissed by some parents who report “toxic mercury levels” among their affected children and who have observed benefits of open-label DMSA administration.
To answer the question in a controlled fashion, the NIMH will enroll about 120 children in the chelation study, with half randomized to placebo and half to DMSA. The trial will last for 6 months, and researchers are enrolling participants now. “We would love to receive referrals,” Swedo said, adding that psychiatrists can find out more by going to www.clinicaltrials.gov or by contacting Lorraine Lougee, LCSW, research coordinator. Lougee's e-mail address is LougeeL@intra.nimh.nih.gov.
Incidence and prevalence
Because of recurrent questions about whether autism is increasing, Swedo was asked about incidence and prevalence. “We have absolutely no data on incidence,” she said. “We can say the disorder appears to be more prevalent now than it has been reported in the past. However, there was a major change in diagnostic criteria and case-finding methods, so it is unclear [whether] it represents a true change in rates of affected individuals. . . . The CDC is conducting several studies currently to address that question.”
There is increasing agreement on what true autism is, using the Autism Diagnostic Observational Schedule, a semistructured observational scale developed to assess social interaction, communication, and play in persons suspected of having autism, and the Autism Diagnostic Interview, Swedo said.
“Those 2 give you nice, reliable cutoffs where you can say a child has autism, is on the autism spectrum, or is developing typically. Including children on the autism spectrum will increase apparent prevalence rates,” Swedo said. “The figure of 1 in 166 children having autism was recently confirmed in a CDC study that reviewed school records and confirmed the diagnosis from medical records. But the study included all children with an ASD as having ‘autism'—this included not only severely affected individuals with full-blown autism but also those with a pervasive developmental disorder not otherwise specified and those with Asperger disorder, a condition [that] is not as impairing.”
“In order to determine the true prevalence of autism and to know whether there is an ‘epidemic' as some have asserted,” Swedo continued, “we need to have better data about the current prevalence of autism and related disorders and then compare those data with comparable data from previous studies. The CDC is conducting surveillance studies at a number of US sites, and the NIH is sponsoring longitudinal investigations here and abroad to address those questions.”
1. Centers for Disease Control and Prevention. How common are autism spectrum disorders (ASD)? Available at: http://www.cdc.gov/ncbddd/autism/asd_common.htm. Accessed January 5, 2007.
2. Pardo CA, Vargas DL, Zimmerman AW. Immunity, neuroglia and neuroinflammation in autism. Int Rev Psychiatry. 2005;17:485-495.
3. Vargas DL, Nascimbene C, Krishnan C, et al. Neuroglial activation and neuroinflammation in the brain of patients with autism [published correction appears in Ann Neurol. 2005;57:304]. Ann Neurol. 2005;57:67-81.
4. Board on Health Promotion and Disease Prevention, Institute of Medicine. Immunization Safety Review: Vaccines and Autism (2004). Available at: http://www.nap.edu/books/030909237X/html/1.html. Accessed January 5, 2007.
Monday, February 26, 2007
Almost lost in all the recent excitement about the Autism Genome Project was the substantial contributions of Cure Autism Now and Autism Speaks which recently merged based on their mutual commitment to accelerate and fund biomedical research into the causes, prevention, treatments and cure for autism spectrum disorders; to increase awareness of the nation's fastest-growing developmental disorder; and to advocate for the needs of affected individuals and families. A gene bank created in 1997 by Cure Autism Now, later joined by UCLA was a precursor to the massive data bank assembled for the Autism Genome Project which kick started in 2002 with funding by Autism Speaks and the National Institute of Health.
"The UCLA Center for Autism Research and Treatment at the Semel Institute for Neuroscience and Human Behavior is among 13 centers in the world to discover two genetic links that cause autism, according to a school press release.
The five year study, which was published in the Feb. 18 online edition of the journal Nature Genetics, came from results from a scan of the world's largest collection of DNA samples from families affected by this disorder.
The study was led by the Autism Genome Project, an international consortium of scientists from 50 institutions in 19 countries. Founded in 2002 with funding from the nonprofit Autism Speaks and the National Institutes of Health, the group shared DNA samples, data and expertise in a coordinated effort to identify autism-susceptibility genes, according to the press release.
Results of the two-pronged approach implicated both a previously unidentified region of chromosome 11 and neurexin 1, a member of a gene family believed to play a key role in communication between brain cells. The neurexin finding highlighted a group of brain cells called glutamate neurons and the genes affecting their development and function, suggesting that they play a critical role in autism spectrum disorders, also according to the press release.
In 1997, the citizens group Cure Autism Now (CAN) created a gene bank in order to advance genetic research on autism. UCLA partnered with CAN to add more than 400 families to the bank, known as the Autism Genetic Resource Exchange.
Autism is a complex brain disorder that strikes in early childhood, often affecting children as young as 2 or 3. The condition disrupts a child's ability to communicate and develop social relationships and is often accompanied by acute behavioral challenges. While the cause remains unknown, scientists suspect the disease is highly hereditary."
Parents who seek to help their OWN children, not the ND'ers themselves, but their own children, through attempts at cures or treatment are vilified by the ND movement. Every major parent driven autism advocacy organization from Cure Autism Now to Autism Speaks, Autism Society Canada, Autism Society America, National Autism Society UK, FEAT organizations, all are roasted for their efforts. They are derided as self centered whiners by the proud members of the ND movement. Pejorative labels such as "Autism Squeaks" and "curebies" are used to dismiss those seeking to cure or treat autism.
Recently CNN's Dr. Gupta featured the story of Amanda Baggs, diagnosed as being a low functioning autistic person, but clearly very intelligent and, with the aid of technology, an excellent communicator. The implied message - even low functioning autistic persons are really quite intelligent and do not need a cure or treatment. Unfortunately Dr. Gupta played into this denial of the existence of truly low functioning autistic persons by continuing a long history of media focus on autistic savants and other high functioning autistic persons while ignoring the sometimes brutal realities which confront low functioning, seriously disabled, autistic persons.
My autistic son, Conor, is a low functioning autistic person who brings me great joy. I delight in talking about how happy he makes me every single day. But, unlike members of the Neurodiversity I am not ashamed to admit the severe challenges he faces in life and I am not afraid to talk about them publicly. Unless such public discussion takes place there will be no improvements for Conor and other autistic persons like him. Of course that is exactly why the Neurodiversity movement attempts to censor such discussion. Content with themselves they wish to deny the opportunity for lower functioning autistic persons to be treated and cured. Is the Neurodiveristy movement ashamed of its lower functioning autistic cousins? It certainly looks that way to this "NT" (Neurotypical).
Is autism simply in the wiring?
Ailments come and go. I don’t mean in a personal sense — although my lumbar vertebrae are creaking again after a blissful period of quiescence — but in a social and historical sense. Homosexuality is no longer an illness. Lefthandedness no longer merits a cure. Could autism be next?
Some people argue that the developmental disorder — which compromises communication, social interaction and imaginative play — is merely an example of human “neurodiversity”. Just as disabled individuals sometimes prefer to call themselves differently abled, some people with autism would like to be regarded as differently wired. To try to alleviate or cure autism, they say, is tantamount to oppression. And genetic tests, which are in development to identify autism in the unborn, are a mere step away from eugenics.
This movement, which boasts groups such as Aspies for Freedom (a reference to Asperger’s Syndrome, a high-functioning form) and the Autism Liberation Front, does not accept the image of autistics as odd loners. Instead, nonautistics are portrayed as sad conformists unable to operate outside the social horde. It opposes any attempts to “cure” or even treat autism.
The movement is driven, unsurprisingly, by those at the high-functioning end of autism. It is ironic that they have been accused of not empathising with others at the low-functioning end, who are less able to cope with everyday life.
Professor Simon Baron-Cohen, a leading autism researcher at the University of Cambridge, says: “I agree that high-functioning autism is better characterised in terms of neurodiversity. Low-functioning autism may also be, but is probably best characterised as involving additional disabilities, such as learning disability, language delay, epilepsy and so on. I don’t think we are looking to ‘cure’ autism any more than we are looking to cure lefthandedness or being gay. But if there were treatments or interventions that help without affecting the areas of strength [such as the excellent attention to detail] I imagine these would be welcomed.”
Sunday, February 25, 2007
Jersey scientists find a possible key to autism
Sunday, February 18, 2007
BY PEGGY O'CROWLEY
A team of New Jersey scientists believes it has found ways to detect biological risk factors for autism through simple urine and blood tests, a discovery that could lead to groundbreaking medical treatment for the neurological disorder.
The team of 16 scientists, mostly drawn from the campuses of the University of Medicine and Dentistry of New Jersey, say their findings, the result of more than two years of study on how the body breaks down fatty acids, could be a breakthrough for what is the fastest-growing developmental disorder in the nation, with no known cause or cure.
The UMDNJ researchers say they have found that children with autism are unable to metabolize key fatty acids that help the body fight inflammation that causes damage to the brain and other organs.
"It's an exciting story that's unfolding," said George Lambert, coordinator of the 15-member research team.
The potential treatment, members of the team say, is a kind of "therapeutic cocktail" tailored to each child, which would give them a dose of a "good" fatty acid that they are not able to make on their own. Team member Bernd Spur of UMDNJ-Stratford created the chemical process to replicate one of those good fatty acids.
"The pathway doesn't work (in the body), so we circumvent it," said Spur, a chemist.
Currently, the only way to diagnose autism is by a clinical assessment of symptoms, which include difficulty with communication and social interaction, as well as obsessive behaviors and interests. New Jersey has a high incidence of the disorder, affecting 1 in 94 children in the state, compared with 1 in 150 in the U.S., according to the Centers for Disease Control and Prevention.
Researchers say that in the future a person's risk for autism could be measured with a simple urine test that would look for high levels of "bad" fat molecules, or a blood test that could reveal genetic problems, including the absence of a key gene, called GSTM1, which is responsible for metabolizing good fats. Many people with autism do not have this gene.
Xue Ming, a neuroscientist and a founding director of the Autism Center at UMNDJ-Newark, discovered that children with autism have higher levels of bad fat molecules in their urine than typical children.
No one understands yet why it is that so many children with autism have such metabolic differences, but Ming suggested it might be caused by an interaction between genes and the environment. It may be that having less of these key fats reduces the body's ability to deal with environmental and metabolic stress.
Since the 1990s, scientists have known about the potential for good fatty acids to treat inflammatory diseases such as Crohn's disease, ulcerative colitis, even asthma and Alzheimer's.
That potential has spurred a frenzy of research into lipids, the fatty compounds that include fatty acids. Studies at the University of Pennsylvania and Vanderbilt University have confirmed the New Jersey group's findings, said Spur.
At Harvard University, researchers are working on treatments for asthma and periodontal disease, while researchers at Louisiana State University are focusing on stroke.
Team members have been meeting every week for more than two years to discuss the results of their experiments. They include Lambert, a pediatric toxicologist who looks at the impact of the environment on children; Spur, the chemist who replicated the fatty acid in the lab; neurologist William Johnson, who associated the missing gene with autism; and Ming, a neuroscientist who tested for the presence of bad lipids in children.
So far, the scientists have obtained six patents for their research, Lambert said. They soon will meet with the Food and Drug Administration to discuss the requirements for producing and testing their substances, he added.
"Metabolic issues in autism are entirely understudied," said Sophia Colamarino, science director for Cure Autism Now, a major advocacy and research group in Los Angeles. "It's a very exciting area. There is accumulating evidence that would clearly tell me this is where I should look."
The New Jersey scientists are cautious, however, about their preliminary results, and warn families not to expect a miracle cure. Testing on humans, they say, could take a few years.
Meanwhile, the researchers are preparing a preliminary study to begin in September. Lambert hopes to work with 5- to 7-year-olds at the Douglass Developmental Disabilities Center in New Brunswick, a school for children with autism run by Rutgers.
Lambert will be giving the children doses of a good fatty acids to see if they have any noticeable effect on the children's cognitive, social and behavioral states. The study will use a control group of similar students.
"New Jersey is the perfect place to do this," said Lambert, director of the EPA-funded Center for Neurotoxicology. "We have a high incidence (of autism), a long history of activism and a strong community."
Saturday, February 24, 2007
The Network of Autism Training and Technical Assistance Programs (NATTAP) and the Autism Society of America present...
First Annual International NATTAP Conference
Hosted by the Ohio Center for Autism and Low Incidence
September 26-28, 2007
Columbus Convention Center - Columbus, OH USA
This forum will provide opportunities for professionals and parents to address international, national, state, regional, and local issues concerning current models of systems, training and technical assistance, data-based decision making, and systems-wide capacity building, with the ultimate goal of improving outcomes for school-age children with autism spectrum disorders (ASD). Empirically-validated interventions will be reviewed. PBIS models across the nation will also be highlighted.Professionals from across disciplines; state special education directors and autism specialists; influential, prominent leaders including legislators; and leaders from across the world will join us as we create a conference atmosphere that encourages networking and an exchange of ideas that will launch a new foundation for programs and services for children with ASD.Conference features include:Review of the prevalence rates of autism spectrum disorders and implications for each state
Presentation of empirically validated programs and initiatives to build capacity and increase learner outcomes
Overview of national trends and services in the field of autism
Facilitated roundtable discussions across topics
Networking opportunities across states, disciplines, and professional levels
Distribution of Technical Assistance guide
Review of National Teacher Competencies in ASD
Content areas will include:
Positive Behavior Intervention Systems Models
A Review of Systems: National, Statewide and Regional
Comprehensive Programming Instructional Techniques and Strategies
Assessment and Identification
Overview of Research in ASD
Building Communities of Practice
Credentials, Standards and Related Issues
Family systems and needs
Early Intervention Models
Transition to Adulthood
Use of Technology and Assistive Technology
For more information, please visit: www.ocali.org/nattap2007
Or email: Dr. Brenda Smith Myles (Conference Chair) or Jill Hudson (Conference Coordinator) at firstname.lastname@example.org
In New Brunswick, after years of parent advocacy, schools have already begun providing ABA services to autistic students in a few cases and commitments to provide training to teachers aides through the UNB-CEL Autism Intervention Training program have been made and confirmed. Parents of autistic children seeking to help their children have been misled before and will have to remain vigilant to ensure the commitments are met but the education commitments made in Ontario and New Brunswick are encouraging news for parents of autistic children in the two provinces.
TORONTO -- School boards across Ontario are being served notice that they must be able to provide specialized autism treatment in classrooms, ideally by September, Education Minister Kathleen Wynne said yesterday.
Currently, parents of autistic children are often forced to choose between keeping their kids at home to receive expensive Applied Behaviour Analysis therapy or taking them to school, where they don't receive the costly special treatment.
Those days will soon be over, since the government is issuing a directive to school boards that they won't be able to ignore, Wynne said.
"We will be making sure that it happens and we will be putting supports in place," said Wynne, who was unable to say how much the new policy would cost.
"There are many places in the province where this is already happening, but it has to be even across the province."
The goal is to have the treatment standardized in schools across the province in time for the next school year, although there's no guarantee that will happen on schedule, she added.
"Will there be places where there will still be work to do? Absolutely," Wynne said.
"I can't say that exactly the same thing will be happening in every classroom in all of the 5,000 schools across the province on the day after Labour Day, but absolutely it's a goal to have a uniform understanding and delivery of that approach across the province -- as soon as possible."
The government's announcement came in response to a newly released report by a panel of stakeholders, which made 34 recommendations on how to help Ontario's autistic schoolchildren.
Advocates said they're thrilled the government has agreed to immediately address 23 of the 34 recommendations and also to review the rest.
Getting ABA treatment in all schools would be an amazing development, but it's equally important the government has committed to act on so many other recommendations, which will help a wide range of kids with different issues, said Karyn Dumble of Autism Ontario.
"It's re-enforcing what we already know, that there's many ways to teach so that students with autism will learn and this is something that our parents across this province have been advocating for," she said.
Some parents, however, said the plan doesn't help their children, who are still too young to go to school and caught on long waiting lists for subsidized treatment.
Friends of Lianne Crawford, whose three-year-old son is autistic, launched the website helpjack.ca to raise money for treatment, which costs $70,000 a year. The website has raised about $15,000.
"We get no government money and we'll never see any funding unless something changes drastically (in government policy)," Crawford said.
Prior to the government's announcement yesterday, Ontario Conservative Leader John Tory unveiled a campaign platform for autism funding that includes $75 million a year to cut the waiting list for treatment of kids under six.
The government's new plan does some good, but doesn't address the waiting list, Tory said.
"I'm not saying the things the government (plans) are wrong or shouldn't be addressed, but I'm saying I think (we're trying) to address the really big issues.
"We are in the fourth year of this government's mandate, with an election six months away, and the government's making that promise again."
Laurel Gibbons, mother of a nine-year-old son with autism, said she, too, is skeptical.
"The school boards are going to need more time than six months in order to implement such a strategy," she said. "Where are they getting the people that are going to be trained for this? What's the hiring process?"
Friday, February 23, 2007
Chief Medical Correspondent
Dear Dr. Gupta
Your interview and comments about an autistic person who is obviously very intelligent and able to communicate at a high level with the use of technology are helpful to assisting public understanding of autistic persons with characteristics similar to that individual. It is also helpful that you have directed people's attention to finding others who might be in a similar situation.
I hope too that you will bring your cameras to the truly low functioning end of the autism spectrum of disorders. There are many truly low functioning autistic persons who do not have a basic grasp of language at the outset. For many technological communication tools, voice synthesis technology, will not offer help. These truly low functioning persons do not necessarily make for a feel good news story on CNN. These souls will not respond to your invitations and you will not be able to engage in "lively email banter" with them. Take your cameras to some of the institutions which provide adult residential care for some of these persons much less fortunate than the person you interviewed. After your visits they too might have "opened your eyes about the world of autism", a big part of that world that is not regularly featured in Hollywood movies and CNN features.
Fredericton NB Canada
Thursday, February 22, 2007
Above are pictures of Stephen Harper, who stood up for Canada yesterday, and Gilles Duceppe, who defended the Nation of Quebec yesterday, against the threat posed by autistic children in need of treatment by ordering their troops to vote down MP Shawn Murphy's private member's motion calling for a National Autism Strategy. The motion sought amendment of the Canada Health Act to ensure that autistic children in Canada, no matter where they resided, would received funding for treatment. Congratulations to these two brave and compassionate leaders for fending off this horrendous challenge to the integrity of their respective nations.
Wednesday, February 21, 2007
HOUSE OF COMMONS OF CANADA
39th PARLIAMENT, 1st SESSION CHAMBRE DES COMMUNES DU CANADA
39e LÉGISLATURE, 1re SESSION
No. 115 (Unrevised)
Wednesday, February 21, 2007
No 115 (Non révisé)
Le mercredi 21 février 2007
Private Members' Business
Affaires émanant des députés
Pursuant to Standing Order 93(1), the House proceeded to the taking of the deferred recorded division on the motion of Mr. Murphy (Charlottetown), seconded by Mr. Szabo (Mississauga South), — That Bill C-304, An Act to provide for the development of a national strategy for the treatment of autism and to amend the Canada Health Act, be now read a second time and referred to the Standing Committee on Health.
Conformément à l'article 93(1) du Règlement, la Chambre procède au vote par appel nominal différé sur la motion de M. Murphy (Charlottetown), appuyé par M. Szabo (Mississauga-Sud), — Que le projet de loi C-304, Loi prévoyant l'élaboration d'une stratégie nationale pour le traitement de l'autisme et modifiant la Loi canadienne sur la santé, soit maintenant lu une deuxième fois et renvoyé au Comité permanent de la santé.
The question was put on the motion and it was negatived on the following division:
La motion, mise aux voix, est rejetée par le vote suivant :
(Division No. 122 -- Vote no 122)
YEAS: 113, NAYS: 155
POUR : 113, CONTRE : 155
YEAS -- POUR
Bell (Vancouver Island North)
Cullen (Skeena—Bulkley Valley)
Martin (Esquimalt—Juan de Fuca)
Martin (Winnipeg Centre)
Martin (Sault Ste. Marie)
Thibault (West Nova)
Total: -- 113
NAYS -- CONTRE
Cannan (Kelowna—Lake Country)
Kamp (Pitt Meadows—Maple Ridge—Mission)
Keddy (South Shore—St. Margaret's)
Kenney (Calgary Southeast)
Kramp (Prince Edward—Hastings)
MacKay (Central Nova)
Moore (Port Moody—Westwood—Port Coquitlam)
Moore (Fundy Royal)
Thibault (Rimouski-Neigette—Témiscouata—Les Basques)
Thompson (New Brunswick Southwest)
Thompson (Wild Rose)
Total: -- 155
PAIRED -- PAIRÉS
Prime Minister of Canada
Dear Honourable Prime Minister
I have read the arguments by members of your party stating that provincial constitutional jurisdiction over health care precludes amendment of the Canada Health Act to require funding of Applied Behaviour Analysis (ABA) for autistic children in each province in Canada, one of the provisions featured in Charlottetown MP Shawn Murphy's private member's motion. With respect Mr. Prime Minister the argument is a non starter. Such amendments would be no more, nor less constitutional, than the Canada Health Act itself. There is no question that the federal government could not by force of law alone require specific treatments in the provinces, even to address a debilitating disorder which is beyond the scope of many provinces. But the federal government can legislate requirements for provincial receipt of federal funding and a requirement to address treatment for one of societies most vulnerable groups of citizens - autistic children - should offend no court's sensibilities. And it would not be unduly confrontational for the federal government to simply legislate that funding would be made available federally to each province which is prepared to provide costly, but effective, ABA treatment for autistic children.
The effectiveness of ABA as a treatment intervention for autism is backed quite literally by hundreds of studies and by the opinions of experts who actually work with autistic children including the experts who gave advice to the office of the US Surgeon General, state agencies in Maine, New York and California, and by the experts on the advisory board of the Association for Science in Autism Treatment. In the court proceedings in Auton the court's decision to require provincial funding of ABA for autism was overturned by the Supreme Court of Canada but the experts at trial were in agreement that ABA is the treatment of choice for autism - there is no effective evidence based alternative.
Mr. Prime Minister you have spoken often of values. I ask you that you release MPs in your party to vote their consciences and vote based on their values in today's expected vote on Mr. Shawn Murphy's National Autism Strategy vote. You are the Prime Minister for all Canadians including autistic children. I ask that you act in accordance with your title as the Right Honourable Prime Minister of all Canadians, and do the Honourable thing for autistic children. Let your MP's vote for them in accordance with their own values.
Harold L Doherty
Tuesday, February 20, 2007
In the excitement of the big autism genome breakthrough the Montreal Gazette offers an important reminder that the research behind this breakthrough was made possible by funding. Funding is critical to sustained uninterrupted research. Now is not the time for complacency. Now is the time to move ahead with more research and with more funding to ensure that the research continues.
Thank you to Dr. Peter Szatmari and all involved in this collaborative effort. As a Canadian I am very proud of the Canadians who led this research effort and I hope that our federal government shows some heart, and some good sense, and continue to fund autism research.
Funding helped autism discovery
The GazettePublished: Tuesday, February 20, 2007
News of a breakthrough in understanding the genetics of autism, which was splashed dramatically across the world's front pages yesterday, provides a precious lesson in the value of research.
The discovery came from a vast sleuthing effort: More than 130 researchers from 50 institutions in eight countries made scans of DNA from 8,000 people in 1,600 families. From all that data, scientists uncovered two new mutations possibly linked to an increased risk of susceptibility to autism, a neurological condition of varying degrees of complexity. The breakthrough should lead, via more accurate diagnostic tests, to earlier, more pertinent therapy.
All those resources were mobilized because of the growing realization that autism is far more widespread than previously thought, touching as many as one child in 165.
Canadians were among the scientists who led the effort. Peter Szatmari, director of the Offord Centre for Child Studies at McMaster Children's Hospital, is described as setting the groundwork for the international effort that got under way in 2002. Steve Scherer, senior scientist of genetics and genomic biology at Toronto's Hospital for Sick Children, is a project co-leader.
The international research effort is run by the Autism Genome Project, Canada's part of which is underwritten by a $6.9-million grant from Genome Canada, primary funder in Canada of genomics and proteomics research.
Every Canadian should be proud this country has contributed to this promising research.
Despite some recent successes, Canada's investment in scientific research has not been everything it could be. In 2005, 40 prominent scientists criticized the Liberal government's funding policy, which required scientists seeking federal funding to find matching money elsewhere. The scientists argued scientific excellence alone should be considered, because premature emphasis on commercial application could stifle basic research.
Ottawa has since 1999 pumped more than $7 billion into scientific research - enough to keep top scientists in the country. But that funding could come to an abrupt end once $400 million in grants announced in November by Industry Minister Maxime Bernier runs out.
The dangers of this kind of off-and-on-again approach to funding were explained to The Gazette in 2004 by Sean Taylor, project manager for the Montreal Proteomics Network: "You don't invest all this money in burgeoning fields like genomics and proteomics, and then just drop it," he said. For Canada to become a research hub, scientists need time and secure funding, Taylor said.
Alberta, at least, seems to understand that. Last week, it announced it will use money from the Alberta Heritage Foundation for Medical Research to try to attract - and keep - "superstar" medical researchers to the province. What a good investment.
Monday, February 19, 2007
Canadian breakthrough offers hope on autism
Project makes possible DNA test to identify children most likely at risk to condition
From Monday's Globe and Mail
A massive international effort led by Canadian scientists has homed in on the genes behind autism - a breakthrough that could revolutionize how the mysterious and surprisingly common condition is both detected and treated.
Touting it as the most significant advance in the field in 30 years, researchers say the landmark project has put within reach a DNA test to identify children with autism early enough to counter the condition's worst effects.
"I don't think it's inconceivable that we're going to be able to prevent autism down the road," said study leader Peter Szatmari, director of the Offord Centre for Child Studies at McMaster Children's Hospital in Hamilton. "The clinical implications of this discovery are unprecedented."
Doctors currently rely on psychological tests to diagnose autism spectrum disorders in children at age 2 or 3. But a DNA test could identify those affected as babies, or perhaps even before they are born.The findings, based on the largest autism DNA collection ever assembled, could also allow parents who have children with autism to learn through genetic screening their chances of having another affected child.
"If you know ahead [of time] of your predisposition to autism, you can make an informed decision," said Marie Jolicoeur, a Burlington, Ont., mother who has two sons with autism disorders and whose family contributed DNA to the project.
Using new genome scanning tools, researchers have found that several different autism-related genes can play a role in different families. This helps to explain why no two children - not even identical twins - have identical symptoms.
The researchers have pinpointed at least five areas of the genome that harbour genes linked to autism susceptibility, including those crucial for brain function. They have also found a genetic mutation tied to the disorder in girls - who are four times less likely than boys to develop autism disorders.
The work has also highlighted how autism can spring from genetic quirks not seen in either parent - suggesting that a genetic glitch has randomly emerged in the sperm or egg cells of the father or mother prior to conception.
Co-author Steve Scherer, senior scientist of genetics and genomic biology at Toronto's Hospital for Sick Children, said, "It may be that 5 to 10 per cent of autism cases are arising from these de novo [new] mutations."
The research, released yesterday in an advance online publication of the journal Nature Genetics, is the first part of a two-phase study run by the Autism Genome Project. It involves more than 137 researchers from 50 academic institutions in eight countries and the study of nearly 8,000 people from 1,600 families who have at least two members diagnosed with an ASD. .........
Sunday, February 18, 2007
The ugly truth is that many in the Neurodiversity movement seem ashamed to acknowledge the existence of severely autistic persons - like my son.
Mark Eyking, Andy Scott, Charles Hubbard
Dear Member of Parliament,
Re: Support for Bill C-304 Autism Strategy Bill
As a mother of an autistic child, I ask you to vote in support of Bill
C-304 when the Bill is subject to a vote in the House of Commons. Bill C-304,
the "National Strategy for the Treatment of Autism Act" is of critical
importance to families with members who suffer from autism. The Centres
for Disease Control in the U.S. just recently reported that the prevalence
rates of Autism Spectrum Disorders have increased to 1 in 150. By any
standard this is a national public health crisis. Yet, not one province offers
the core healthcare treatment for autism under Medicare and there is no
National Autism Strategy to deal with this growing epidemic.
Although the federal government announced some autism consultation initiatives
in November 2006 and supported a motion for a National Autism Strategy in
December 2006, these are non-binding and largely symbolic window
dressing. Words are not enough. We need action. Please vote to refer Bill C-304
to the next stage in the approval process and let the Committee examine the
Bill and do its work. Please urge your fellow MPs to support the Bill. Thank
jurisdiction is no more than a cop-out.
Lila Barry, President
Autism Society New Brunswick
Saturday, February 17, 2007
I am pleased to give a shout out for my wife, Heather, and her brand new blog site Heather Doherty Writes:
Apart from being a mother to two sons, one of whom is profoundly autistic, and working at the UNB Law School Library, Heather has found time to resume her education completing a BA (English), a writers program at Humber College and written a novel Goody Bledsoe which has been published by Oberon Press. Fortunately her husband (me) is a heck of a nice guy, easy to get along with ... etc etc etc.
- From Wikipedia, the free encyclopedia
Parents and families of children newly diagnosed with autism will face many daunting, at times overwhelming challenges. As the father of a soon to be 11 year old boy with classic Autism Disorder I have dealt with those realities for the 9 years since my son was diagnosed at age 2. One of the more seductive challenges that parents will face is the siren calls of those who oppose any effort to treat, educate or heaven forbid change an autistic child for the better. Do not listen to the sirens' call.
The sirens will outright mislead you and tell you that autism is not a disorder or a disability, that it is simply another variation in the human condition, neither good nor bad. They will beguile you with tales of how autistic intelligence is simply different, perhaps even better, than the intelligence of those whom they label as NT or neurologically typical. The sirens will tell you not to mourn for your autistic child, to accept your child's autism; the will even tell you to find joy in your child's autism. They will encourage you to accept your child as he or she is and not to seek to change your child.
The sirens will not talk about such realities as lack of communication, self injurious behavior, or lack of awareness of potentially life threatening dangers posed by automobiles or broken glass. The sirens will not tell you that some autistic children are sent home from neighborhood schools sometimes in handcuffs or that they are sometimes housed in criminal detention centers for youths because no decent facilities exist in which autistic youths and adults with severe behavioral issues can reside. They will not talk to you about autistic adults residing in mental health hospitals.
The attraction of the siren's call is the attraction of sweet surrender. If a parent is told that their child's autism is a beautiful thing, a joy to be embraced by the parent it will be easier to let go, to give up and to refrain from taking on the enormous challenge of doing the best that can be done for your child. It is not easy to raise, care for and educate many autistic children. It is absolutely one of the most rewarding tasks a parent can face but it is challenging, stressful and costly. It would be easy to give up and let go. The sirens would encourage you to give in, hug your child (as though you don't already anyway) and not try to change your child with proven effective methods like Applied Behavioral Analysis.
Don't listen to the sirens' call. Do not squander your child's opportunity to learn, grow and develop to the fullest extent possible. Give your child the intervention he or she needs now. The sirens are not responsible for raising your child and providing him/her with the skills necessary to survive, prosper and enjoy life. That is your responsibility. The time to teach and reach your autistic child is NOW. Do not squander it on the sirens' foolishness. They will not be there to help your child when help is need. They will not help teach him/her to speak and read and brush his/her teeth. They will not be there if your child breaks windows and mirrors with his hands, bites his wrists, gets sent home in restraints or goes off to reside in institutional care. These are not exaggerated claims. They are realities that occur. And the best way to avoid them is to help your child now with proper evidence based intervention provided by properly trained service providers. And learn how to apply those interventions in the home yourself on a 24/7 basis.
Do not listen to the sirens. Love your child, embrace your child. But fight your child's autism and do the best you can for your child.
P. Mackay,R. Moore, G. Thompson
F. Manning, L.Hearn
Dear Honourable Members of Parliament
As Conservative Members of Parliament you will probably be directed to vote NO to Charlottetown Liberal MP Shawn Murphy's private member's motion calling for a National Autism Strategy including amendments to the Canada Health Act to help ensure that, regardless of where they live in Canada, autistic children will have access to government funded early interventions which are evidence based and proven effective in dramatically improving their lives. Senior members of your party have indicated that constitutional jurisdiction precludes endorsing this proposal. With respect, I think you all know differently. Cooperative federalism has long ago rid this country of self imposed timidity in the face of challenges which although originating in fields within provincial jurisdiction reach across provincial boundaries and abilities limit all Canadians. Without cooperative federalism there would be no Canada Health Act to begin with and Atlantic Canada would look much different today and not for the better.
The truth is that 1 in 150 children in YOUR riding, based on Center for Disease Controls most recent estimates, have some form of autism spectrum disorder. Autism, despite movies about individuals who have accomplished great feats, is, for most persons with autism, a debilitating disorder marked by very limited communication skills, aggressive , even life threatening, self injurious behaviour and a life of institutional care. Many of the 1 in 150 children with autism disorder in your riding will be confronted by these realities.
I have a son with classic autism disorder who is described by his pediatrician as profoundly autistic but I choose to speak of some of these painful realities because I believe that his life and others like him can be improved dramatically by facing these realities and providing evidence based treatment and education. Hugs are good, but hugs are not enough. Kind words are appreciated but kind words work no miracles. Evidence based interventions, supported by literally hundreds of serious studies, will dramatically improve the lives of the autistic children in your riding. But such intervention is expensive and requires government funded assistance to ensure that all children receive this medically necessary help.
Although your party will undoubtedly instruct you to vote no, I ask you to vote your conscience on Shawn Murphy's national autism strategy motion. Atlantic Canadian conservatives have historically shown both independence of thought and action and a keen social conscience. From Robert Stanfield to Richard Hatfield Atlantic conservatives have not been reluctant to help those who most needed help. I ask you to consider that tradition of social conscience and help the autistic children in your riding by voting YES to Shawn Murphy's private member's motion for a National Autism Strategy and amendments to the Canada Health Act.
Harold L Doherty
Thursday, February 15, 2007
National Strategy for the Treatment of Autism Act -
The House resumed from December 7, 2006, consideration of the motion that Bill C-304, An Act to provide for the development of a national strategy for the treatment of autism and to amend the Canada Health Act, be read the second time and referred to a committee.
next intervention previous intervention [Table of Contents]
Mr. Rick Dykstra (St. Catharines, CPC):
Mr. Speaker, it has been a little while. I think I got about three minutes of my speech in prior to the break and it is good to get back into it.
The Canada Health Act discourages the application of extra billing or user charges through automatic dollar for dollar reductions or withholdings of federal cash contributions to a province or territory that permits such direct charges to patients.
Under the comprehensiveness criteria of the Canada Health Act, provincial and territorial health insurance plans must ensure coverage of all insured health care services. Insured health services under the act are defined as medically required or necessary physician services, hospital services, and surgical dental services when a hospital is required. In this way the Canada Health Act defines a minimum range of services to be insured on a national basis in our country.
Services provided by other health care providers outside a hospital are not considered to be insured health services under our act. That includes intensive behavioural therapy services for autism spectrum disorders since these services are generally provided outside of hospitals by non-physicians. These services are considered to be additional benefits and may be insured at the discretion of the province or territory, but that is their decision. They are not subject to the act's provisions. However, there is nothing in the Canada Health Act that stops provinces and territories from providing these services on an insured basis if they so wish to.
The bill presented by my hon. colleague, if adopted, would affect the definition of insured services under the act. In short, that means if Bill C-304 were to be passed by this House, provinces and territories would be required to provide applied intervention therapy services on an insured basis to all their residents, in addition to hospital and physician services.
The purpose of the Canada Health Act is to ensure that Canadians have access to medically necessary hospital and physician services without financial or any other impediments.
Hospital services that are considered to be medically necessary are outlined in the act and include, among others, such services as nursing services, the use of operating rooms, and drugs administered in hospitals. Medically necessary physician services are agreed upon through consultations by members of the medical profession and provincial and territorial governments. They are then determined by physicians at the point of service.
Referring to specific services in the Canada Health Act would be incompatible with its overall structure and intent.
The Canada Health Act references “insured services” and “medical necessity” but does not define specific services for specific illnesses or conditions. This is critical to the act and it needs to be clearly understood within the context of this private member's bill.
In provinces and territories there are mechanisms in place to examine the insured status of health services. Provincial and territorial ministries of health consult with members of the medical profession to determine which services are medically necessary and should be covered by their plans. Such consultations have proven to be an extremely effective method of insuring that Canadians receive appropriate medical care.
The second concern that this bill presents is with regard to the respective roles and responsibilities of the federal and provincial and territorial governments.
As we know, under the Canadian Constitution, the responsibility for matters related to the administration and delivery of health care services falls primarily under the jurisdiction of provincial and territorial governments. It is part of our Constitution and one that we must ultimately respect.
While we may not always agree, it is the responsibility of the provincial and territorial governments to set their priorities, administer their provincial health and social services budgets and manage their resources in the manner that best suits provincial and territorial needs while still upholding the principles that are in the Canada Health Act.
The federal government, for its part, by law, is responsible for the promotion and preservation of the health of all Canadians. It is appropriate, when describing federal responsibilities in health care, to note that the federal government cannot interfere in provincial-territorial responsibilities as defined under the terms of our Constitution, neither can we be seen as infringing upon those responsibilities.
Unfortunately, Bill C-304 attempts to require provinces and territories to provide behavioural treatment services for autism and to do so on an insured basis. As it is the provinces and territories that are responsible for matters dealing with the delivery of health services, the bill would be perceived as an unacceptable intrusion on provincial and territorial responsibilities across the country.
Amending the Canada Health Act would be viewed by the provinces as a unilateral imposition by the federal government and could potentially upset the longstanding federal, provincial and territorial relationship that we now have and that has been encouraged to develop and has developed the health care system that we as Canadians are truly proud of.
Clearly, the Canada Health Act is not the proper place to regulate matters such as behavioural therapy services which fall under provincial jurisdiction.
Finally, even if such an amendment were made to the Canada Health Act, it is not certain that it would actually achieve its objective. While the act places conditions on payments to the provinces and territories and can reduce or withhold transfers if these are not met, it cannot dictate to a province or territory how to run its health care plan, much less still how to run the institutions.
There is no question that individuals affected by autism spectrum disorders and their families may experience tremendous worry and significant financial and social implications. We are not here to debate that. That is why the government recently announced the package of new initiatives on autism spectrum disorders.
These initiatives are consistent with the federal roles and responsibilities in the health sector and there is no intrusion in provincial jurisdiction. The focus is on research, surveillance and information dissemination.
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Ms. Penny Priddy (Surrey North, NDP):
Mr. Speaker, the bill introduced by the member for Charlottetown has been troubling many of us who know people with autism and who have talked to the families of children and adults with autism. The member's bill contains a number of factors that need to be considered.
We do know that for many parents of children, teenagers or adults with autism, it is an autism spectrum disorder. This is not something where when someone brings a baby home from the hospital, a physician can say that the child has autism. The diagnosis may be early or it may be at the age of three, at the age of five or it may only be when the child starts school. However, that is fairly unusual when we look at the kinds of disabilities that we see with children, teenagers and into adulthood.
What we do know is that we are seeing increasing numbers of children with autism and the federal government does have a role to play in consultation with parents.
I have talked to parents about the incredible frustration of finding supports for their child and then, once having found them, not being able to afford them or literally bankrupting families. When I say bankrupting, I mean they are selling their homes and their possessions to finance the treatments which, a good percentage of the time when initiated and administered early enough, are successful.
The other devastating thing for families is that the services are so displaced that families move from places they have lived all their lives, or their families before them, into perhaps an urban area because it is the only place they can find somebody who is trained in either Lovaas or intense behavioural intervention.
The lives of most families are emotionally, physically and financially disrupted and often bankrupted by these circumstances. The other thing we need to look at when we look at the supports for people with autism is that this is lifelong. Even when we can initiate support early, the individual will perhaps always require some kind of lifelong support. Those supports are not only for children aged 3, 5 and 12, they are also for teenagers. What happens after they leave high school? How do we support an adult who is at some stage in that autism spectrum disorder, perhaps at a stage where they need a significant amount of support in their adult lives?
I certainly do not disagree with what the previous member said about creating national standards for autism treatment, about the need for more research, actually an oversight mechanism to monitor what is becoming a crisis in many parts of our country, and that we need to provide increased funding for autism research, part of which has been spoken to by the federal government.
However, there is no question that families need financial support. They cannot afford all the things their children are going to need. However, I would question whether opening the Canada Health Act is the best way to do it. However, they should be covered medically for their expenses. They cannot afford it. We would not expect somebody whose child has spina bifida or some other kind of neurological disorder to cover the treatment expenses, nor should we be expecting these parents to cover the treatment expenses and ongoing expenses that their child, teenager and adult might incur.
I will be interested to hear the member speak more about how he believes opening up the Canada Health Act would actually make a difference and whether he has looked at other ways that individual provinces could provide that kind of service.
I want to see a national standard of treatment so that people do not need to move from Prince Edward Island to Alberta or from British Columbia to Alberta, which many people have done in order to receive support for their child with autism. In point of fact, some people who have worked with us in a previous government had to do exactly that with their young son. They moved from British Columbia to Alberta in order to receive the kind of treatment that their child needed.
We cannot have that because it is a piecemeal approach. We do not have a piecemeal approach with other neurological disorders. We do not have a piecemeal approach if one's child, as I say, is born with spina bifida or some other kind of neurological damage or trauma. We do not tell them that this kind of surgery is only available in New Brunswick and not in Manitoba. We tell them that there is a reasonable standard across the country for the kind of support that they need.
Our goal is to have a national standard of treatment that is available to all parents of children, teens and adults with autism. I will be most interested to hear the mover of the motion speak more about all of the options he looked at in terms of funding and the availability of funding as he looked at opening up the Canada Health Act.
However, we absolutely support covering the expenses of those parents. They should not bankrupt themselves in order to provide for their child.
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Mr. Dean Del Mastro (Peterborough, CPC): previous intervention
Mr. Speaker, I thank the House for the opportunity to participate in the debate on Bill C-304.
The title of the bill is a national strategy for the treatment of autism act. However, what the title does not make clear is the fact that the bill is calling for an amendment to the Canada Health Act.
I will take this opportunity to address why the concerns raised by the hon. member should not be addressed under the Canada Health Act. Although the care for individuals with autism and their families is of great concern to the government, the Canada Health Act is, in my opinion, the wrong instrument to achieve this objective.
The Canada Health Act sets out the broad principles under which provincial plans are expected to operate. The act establishes certain criteria that provincial plans must meet in order to qualify for their full share of federal health transfer payments. Federal transfer payments may be reduced or withheld if a province does not meet the criteria and conditions of the act.
These criteria are the cornerstones of Canada's health care system. They are as follows: reasonable access to medically required hospital and physician services, unimpeded by charges at the point of service or other barriers; comprehensive coverage for medically required services; universality of insured coverage for all provincial residents on equal terms and conditions; portability of benefits within Canada and abroad; and public administration of the health insurance plan on a non-profit basis.
In addition to the above criteria, the conditions of the act require that the provinces provide information as required by the federal minister and give appropriate recognition to federal contributions toward health care services in order to qualify for federal cash contributions.
The act also discourages the application of extra billing, or user charges, through automatic dollar for dollar reductions or withholding of federal cash contributions to a province or territory that permits such direct charges to patients. In fact, the fear that user charges and extra billing would erode accessibility to needed medical care was a major impetus in the development of the act.
The Canada Health Act was enacted to protect the fundamental principles of our publicly financed, comprehensive, portable and universally accessible health insurance system. I think everyone would agree that these are laudable objectives.
Our system of national health insurance, or Medicare as it is popularly known, is close to the hearts of Canadians and something too precious to tamper with. Canadians support the five principles of the Canada Health Act and feel that Medicare is a defining feature of Canada. Time and time again, polls demonstrate high support for Medicare.
If adopted, the amendments presented by my hon. colleague in this bill would affect the definition of insured services under the act. This means that if Bill C-304 is passed by the House, the provinces and territories will be required to provide, on an insured basis to all of their residents, behavioural therapy treatment for individuals with autism spectrum disorder. This is not the purpose of the Canada Health Act. I want to emphasize that the Canada Health Act was not meant to address issues such as behavioural treatment for autism spectrum disorder.
Introduced in 1984, the Canada Health Act brings together previous legislation, the Hospital Insurance and Diagnostic Services Act, 1957 and the Medical Care Act, 1966, to ensure that all Canadians have prepaid access to medically necessary hospital and physician services without financial or other barriers. The Canada Health Act references insured services and medical necessity, but does not define specific services for specific illnesses or conditions.
Insured health services under the Canada Health Act are defined as medically required/necessary physician services, hospital services and surgical dental services when a hospital is required. Hospital services considered to be medically necessary are outlined in the act and include, among others, such services as nursing, the use of operating rooms and drugs administered in hospitals.
Services provided by other health care practitioners outside a hospital are not considered to be insured health services under the act. This includes intensive behavioural therapy services for autism spectrum disorder since these services are generally provided outside hospitals by non-physicians. These services are considered to be additional benefits and may be insured at the discretion of the province or territory. They are not subject to the act's provisions.
The decision to provide services to individuals with autism spectrum disorder as part of a package of insured health services should be left to the provinces and territories. Each jurisdiction has mechanisms in place to examine the insured status of health services.
Provincial and territorial ministers of health consult with the members of the medical profession to determine which services are medically necessary and should be covered by their plans. They are then determined by physicians at the point of service.
Such consultations have proven to be an effective method of ensuring that Canadians receive appropriate medical care. Clearly, the Canada Health Act is not the proper place to regulate matters such as behavioural therapy services, which properly fall under the provincial jurisdiction and are better handled at that level.
We also have to recognize that even if the Canada Health Act were the appropriate place for such a provision, it probably would not achieve its objective. The act places conditions on payments to the provinces and territories and can reduce or withhold transfers if these are not met. It cannot dictate to a province or territory how to run its health care plan.
The federal government recognizes that the provinces and territories have the primary responsibility for the organization and delivery of health care services and that they require sufficient flexibility to operate and administer their health care insurance plans in accordance with their specific needs and situations.
To date, this approach has served us well and there does not see to be any reason to change it at this time. This is why the flexibility inherent in the Canada Health Act has always been one of its strengths. Since the enactment of the act in 1984, the federal government has always attempted to work with the provinces to make the act a viable piece of legislation. It could be dangerous to tamper with the provisions of the act when they have received such wholehearted support.
This does not mean the federal government has no interest in the issue of autism spectrum disorder. Quite the contrary. As demonstrated by the announcement on November 21 of the five new initiatives aimed at laying the foundation for a national strategy on autism spectrum disorder, Canada's new government is clearly committed to helping individuals with autism and their families. However, while autism spectrum disorder and treatments for the disorder are serious concerns, the Canada Health Act is not the appropriate vehicle to address these issues.
The proposal put forward by my hon. colleague is commendable, however, I cannot support the bill. The proposed amendment is inconsistent with the purpose and intent of the Canada Health Act.
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Mr. Brian Murphy (Moncton—Riverview—Dieppe, Lib.):
Mr. Speaker, I am pleased to say a few words on Bill C-304, An Act to provide for the development of a national strategy for the treatment of autism and to amend the Canada Health Act.
First, I would like to congratulate the hon. member for Charlottetown for the work done in this House on this bill.
Bill C-304 is a very important bill, as we can see from the debate on it, although a private member's bill may well work toward defining and differentiating different parties views of who will be left behind and who will not.
I am very pleased to rise and offer my support to Bill C-304, as it provides a national strategy, in law, for the treatment of autism.
The bill incorporates three main provision.
First, we are asking the Minister of Health to convene a conference involving the ten provincial and territorial health ministers to discuss the important issue and begin crafting a national strategy for the treatment of autism.
Second, we are asking the Minister of Health to table a formal strategy for the treatment of autism before the end of 2007.
Third, the bill asks that the Canada Health Act be amended to include applied behaviour analysis, ABA, and intensive behavioural intervention, IBI, as medically necessary for required services.
These measures are considered provisions designed to address a very real health problem in our country, one that affects thousands of Canadian families, no less detrimental than the diagnosis of terminal cancer or any other maladies that affect Canadians in general.
Let me tell members about a real life situation in my province of New Brunswick. I know a couple who have three children. They are seven, five and three years old. The first two of these children were diagnosed with autism. One of the children did not speak until he was three and a half years old. He had been very aggressive and he had many odd self-stimulatory behaviours. The parents did not know how to cope with the problem. He was described by a pediatric neurologist as severely autistic. The second child appeared to be less severely autistic, but she did not learn to speak until she was three years old, did not interact with her peers and seemed withdrawn from the outside world.
When the diagnosis was made some time ago, the discussion centred around appropriate treatment. Unfortunately, ABA was just in its infancy with respect to recommended treatment in the province of New Brunswick. There was no funding available and no professional help available.
These two very fine people, Charlotte and Luigi Rocca, read books. She retired from her law practice and devoted herself to her two autistic children. Through ABA and the expenditure of hundreds of thousands of dollars over the years, the results are astounding. These two children, to use one example of their achievements, at the grade two level lead the class now in their reading skills in English. They are involved in soccer and tae kwan do, not exactly sports that require retreat from the madding crowd around us. They are two very well developed, normal children. However, this did not happen with the help of the New Brunswick medical care system or the Canadian national Health Act.
ASD is a complex of potentially devastating problem for parents such as the Roccas. It affects people's ability to communicate, form relationships and interact with their environment. Within the spectrum there are specific diagnoses: pervasive development disorders, Rett syndrome, Asperger syndrome and child development disorder.
Symptoms can vary widely. Some who suffer from ASD are capable of leading normal, healthy, happy, productive lives. Many more, however, require extensive treatment to mitigate or compensate for unresponsive, uncommunicative and sometimes violent and self-destructive behaviour.
After a diagnosis, if children receive treatment early enough, typically before the age of six, and intensively enough, typically 30 to 40 hours per week, studies have shown that up to 50% can recover to the point of being indistinguishable from their peers. Even those who do not recover completely can show great improvement.
The debate is over. ABA and IBI treatments work. Both are designed to teach autism sufferers how to function in the world. When they are employed, the results can be dramatic and encouraging.
Until recently our understanding of both the incidence and special costs of autism was fairly primitive. However, the most recent, reliable information suggests that as many as one in 167 Canadian children suffer from some form of ASD.
We also know there is no cure and that there are financial burdens borne by families mostly in this country. The treatments can be as high as $60,000 a year. It is an extraordinary load to ask average Canadian parents who are victimized by this disorder to carry for even a short period of time, but the evidence is clear that the money spent on the treatment is effective and we can do something about it by making it a national health question. What can parliamentarians do to help lighten the load? They can do as the hon. member for Charlottetown has done in proposing this bill.
The courts have already rejected the argument that governments share a responsibility to treat autism and there are other constitutional issues to consider. How far should the federal government go on a health issue that properly falls within provincial jurisdiction? This has been referred to by my colleagues. However, the member for Charlottetown and I believe that the House has a moral responsibility to do everything it can. Make no mistake, we can do a lot. The Canada Health Act comes from Parliament.
Currently, medicare does not provide for the treatment of autism. Without sufficient public health care coverage, families will continue to mortgage their homes, extend their lines of credit or even bankrupt themselves as they desperately search for ways to pay for the cost of treatment. Many who run out of options will simply have no choice but to select treatment on the basis of affordability rather than clinical need.
How is that different than an American system of medical care delivery? How is it different to say that if parents have money they can get ABA or IBI, the treatment necessary to make their children performing members and integrated into society. The treatment works. It is very expensive and it should be afforded under any national health care scheme.
The act is not asking that much. It is asking, first, that the Minister of Health convene his counterparts, the ministers of health throughout the provinces and territories. In my province of New Brunswick the minister of health is very open to this suggestion.
The second suggests that the Minister of Health, who may be well on the road to doing this, posits and strategizes a national strategy to combat autism. While this may have been done outside the confines of this place, we think the bill before us, presented by the hon. member for Charlottetown, is the appropriate way to ensure that it is done in a proper manner.
It is not fair, equal or just. Protecting all of the citizens of Canada from crippling illnesses that financially burden families unfairly and end up in treatment of maladies different throughout the provinces and different according to one's means could not have been the vision of Tommy Douglas. This could not have been the vision of those who have modified the health acts across this country over the last 40 years.
Beyond this, there is a big difference in the availability of treatment across Canadian provinces, as we have just indicated. In Alberta, for example, children have full access. In Ontario, kids have access up to a certain age. In other provinces, such as in my province of New Brunswick, it is simply not available except perhaps through means tested social services or welfare programs.
Again I ask you, Mr. Speaker, and all members of the House: Is that fair, particularly when we have the Canada Health Act to help us develop new policies and programs that will benefit our most vulnerable citizens? Clearly, we must acknowledge that provincial health care plans are just that, provincial. We must respect the division of powers between federal and provincial levels of government, but that does not mean that we should abrogate our responsibility as parliamentarians within the constitutional framework.
Again, Bill C-304 is a noble effort to deliver a national health care strategy for the treatment of autism and to treat all Canadians afflicted by this in a fair and equal manner.
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Hon. Shawn Murphy (Charlottetown, Lib.): previous intervention
Mr. Speaker, as the previous speakers have indicated, this is an extremely important issue, and I would suggest it is a raging issue right across the country. The prevalence of autism is extremely high and seems to be rising. The cause remains unknown, but we all know that early diagnosis and intervention is so important.
Let us make it absolutely clear to everyone in this room and everyone watching these proceedings that this is a health issue. That train has left the station; no one in this House is prepared to debate that issue.
However, autism is not treated as a health issue. Many provinces treat autism in the social services envelope. It is subject to a means test; people are told they will get money if they do not have any money. It is not treated in the same way as other health issues, such as cancer and heart problems. It is totally inconsistent from one province to another province. In some provinces it is a small amount of money from the social services envelope. Other provinces have more progressive plans that provide ABA and IBI treatment. While they are not totally accepted, they are the generally accepted treatment modalities for this particular problem.
We are talking of what I classify as orphans in the health system. It cries out for a response from the federal government, but also from the provincial governments. I suggest the provincial governments would certainly be willing to talk to the federal government and come forward with a combined response.
Let me be absolutely clear that this will happen. Whether it happens with Bill C-304 or a future bill, it is going to happen.
If parliamentarians in the House of Commons are not prepared to deal with it, there is another body that will deal with it and that is the courts. Someone is going to bring it to court and the judge is going to ask, “Is it a health issue?” Yes. “Is this the accepted modality of treating the health issue?” Yes. Then that judge is going to say, “I am not prepared to discriminate between someone with this particular problem and someone with cancer”, and the judge will order the provinces to pay for it.
I would ask the members of this assembly to be bold and courageous and do the right thing. I urge them to pass this legislation before we are dragged into the courts kicking and screaming.
There will be people who will stand up, and some have already, and give all kinds of excuses. One member said earlier that it is a provincial issue. I find that somewhat hypocritical. It is a provincial issue, but the federal government has a responsibility.
Only about 40 minutes ago we passed a private member's motion. The government members all stood up and voted for it. I will read the motion:
That, in the opinion of the House, the Minister of Health should continue to work collaboratively with Statistics Canada, the provincial and territorial cancer registries, and key stakeholders towards the ultimate goal of creating uniform national standards and guidelines for the surveillance of all malignant and benign brain tumours, including data collection, analysis and reporting.
That is a cancer issue. I would suggest that is a provincial issue if we accept the arguments of the members across. That is only an excuse.
I would suggest that the people of Canada are watching us on this particular issue. Just last week George Bush, who represents a country that does not have a public health system, passed a bill and voted a billion dollars on this particular issue. I would hope that we would not fall behind George Bush when dealing with this particular issue.
On this very important issue I urge everyone to do the right thing and support Bill C-304.
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The Deputy Speaker: previous intervention next intervention
The question is on the motion. Is it the pleasure of the House to adopt the motion?
Some hon. members: Agreed.
Some hon. members: No.
The Deputy Speaker: All those in favour of the motion will please say yea.
Some hon. members: Yea.
The Deputy Speaker: All those opposed will please say nay.
Some hon. members: Nay.
The Deputy Speaker: In my opinion the yeas have it.
And five or more members having risen:
The Deputy Speaker: Pursuant to Standing Order 93, the division stands deferred until Wednesday, February 21, 2007 immediately before the time provided for private members' business.