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Correcting Federal Neglect of The Autism Epidemic

Dec 5, 2018 by

The federal Interagency Autism Coordinating Committee, or IACC, has had plenty of time – 10 + years – to make a difference in the lives of people with autism. It has failed miserably on all fronts – research, family support and special education — and should be disbanded when it is up for Congressional renewal in 2019. Highly qualified individuals who are critical of government policies in these areas are rarely selected to serve on this committee, or they are simply outvoted.

1.    Misspent research funds. Despite spending hundreds of millions on research, the various recipient federal agencies have not discovered the cause of autism. Instead, it they continue to misspend by seeking genetic causes and ignoring likely environmental ones such as vaccines, pollution and excessive electromagnetic radiation. It is simply impossible that sufficient genetic change could occur in a single generation to cause the huge jump in autism incidence from 1 in 5000-10,000 (1985) to 1 in 36 (2018). To protect our pharmaceutical, medical, chemical, food, insurance and media industries, and politicians who benefit from their campaign contributions, federal agencies like the CDC and FDA continue to engage in one of the most massive cover-ups in our history, right there with the 40-year governmental cover-up of the health dangers of smoking tobacco.

2.    Little financial help to families impoverished by autism. Despite expensive care parents must provide their children with autism well into adulthood, the federal government provides little financial relief beyond their one-size-fits-all tax breaks or payments to adults with disabilities – for example, there is no insurance coverage for out-of-network doctors and dentists who specialize in caring for individuals with autism yet do not accept any insurance, or for specialized laboratories that have sophisticated tests for medical conditions associated with autism, or for supplements and special diets that are essential for recovery or preventing further disease.  Although insurance will cover expensive drugs and treatments when individuals are sick, these often do not work for individuals with autism and make many sicker. Better to invest in parents to keep their autistic children out of the hospital or institutions through well-researched preventive care including healthy diets with organic food and vigorous physical activities.

Although several states provide Medicaid-funded services like attendant, respite and companion care to families caring for autistic children and adults, the pay is typically very low (e.g. $11-12/hour before taxes), and training to ensure the competence and safety of caregivers rarely exists. The federal government could incentivize states to experiment with a variety of approaches to address these deficits.

3.    Reversing the massive failure of special education for children with autism. In fact, the neglect and abuse these children often receive in school clearly harms them. In addition to lack of qualified instructors (with advanced behavioral management and pedagogical training) and expert supervision (by professional BCBAs),other contentious issues include misappropriating special ed funds, lack of program accountability, bullying of parents and in attention to bio-medical antecedents of autism (e.g. auto-immune disorder, mitochondrial dysfunction, sensitivity to gluten). Also missing in the typical school curriculum is enough time for physical education, music, art, dance and suggestions for better nutrition and eating habits. Most of these kids are not healthy or fit with obesity being a major problem. Along with contributing to their physical and mental health, participation in the arts and vigorous physical activity often helps these kids learn academics and how to relate to peers.

Solutions:

1.     Replace the IACC with an autism task force located in the Office of the President or the Office of Management and Budget. It would finally declare autism a public health emergency and become responsible for overseeing autism-related activities in all federal agencies. The task force would be responsible for proposing federal policy for combatting autism and related neurological disorders, preparing the annual federal budget for autism-related activities in the relevant agencies and evaluating agency performance in conducting these activities. 

2.     Move vaccine safety from the CDC to the new Vaccine Safety Commission (VSC) initially proposed by the president during his election campaign. The VSC would be staffed by epidemiologists, molecular biologists, chemists, clinical physicians and psychiatrists with specialized training in autism, and others with relevant specialized training and experience. Congress should also eliminate the federal vaccine court and return plaintiffs to a normal process of being able to sue vaccine makers for injury. This is how it used to be prior to 1986 legislation, and the subsequent loss of checks and balances has been highly damaging.

3.     End school monopoly for programs that target individuals with neurological disabilities. The federal government should amend the Individuals with Disabilities Education Act by ending the school monopoly of special education that has led to major conflict of interest. Initially, the new legislation would target programs that serve children with autism and other severe neurological disabilities. Currently, public schools perform all three special education functions — diagnosis, prescription (IEP), and filling the prescription. If there was ever a rationale for having school money follow students to the educational provider selected by parents, it would be for children with autism and related neurological disabilities. Here’s my take on how to bring more competition, competence and caring into the system by having different institutions take responsibility for different functions:  
http://www.educationviews.org/increase-federal-special-education-funding-parental-choice/

By Barry E. Stern,Consultant on Education and Workforce Development, former federal education official and father of 19 yrs old daughter with autism.

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