AUTISM / NCSL Autism Legislation Data Base

From the National Conference of State Legislatures ABOUT page:

In 1974, three organizations represented the interests of legislators and staff, but their influence was diluted. So seven inventive legislative leaders and two staffers got together and envisioned a single national organization to support, defend and strengthen state legislatures. After a survey of lawmakers and staff from around the country confirmed their idea was a good one, the three organizations dissolved, and on Jan. 1, 1975, the National Conference of State Legislatures was born.
Lawmakers play a vital role in developing the States’ Agenda, the blueprint for NCSL’s advocacy work on Capitol Hill. Each year, legislators and staff from across the country who participate in NCSL’s nine Standing Committees adopt policies under our rules of procedure for consideration at the annual Business Meeting during the Legislative Summit. If two-thirds of the states in attendance approve them, these policies become the backbone of NCSL’s efforts to fight unwarranted federal preemption of state laws, unfunded mandates and federal legislation that threatens state authority and autonomy. It’s important work, and NCSL takes its cue from the states.
NCSL is an organization that “helps” state legislatures – an advocacy group that claims to serve both Republicans and Democrats, but their self-description Highlights protection of state Laws vs. federal laws.
Note: No attribution as to who wrote this piece or their qualifications. In popular consumption of information, we see a pattern of an institution, publisher or individual merely copying “something”  they find on the internet, and by repetition, this chunk of “knowledge” becomes accepted as official, authoritative, and therefore true. This is written for state legislators – a very simplified “version” of a complex situation.
The summary below is clean (sure of its facts, although “facts” about ASD are whimsical these days). The point of the piece, in light of this organization’s goal, is that the Feds spend a whole lot of money on Autism / Autistics, which may or may not be well spent or productive. My “take” is that the more bureaucracy, the more quickly ideas about Autism become fossilized, trapping individuals in social-political systems run by incompetent people who think that solutions come out of meetings, committees, budgets, laws and reports.

The danger is two-fold: not only the federal bureaucracy works to antagonize real research, but state legislatures tend to be in the control of religious fanatics, insurance salesmen (highly biased re: healthcare) and all form of uninformed people.

So who do you want to influence your fate, or that of your ASD child?

February 2016

Autism spectrum disorder (ASD) causes developmental disabilities and numerous social, behavioral and physical challenges. Individuals with ASD often display unusual behaviors and interests, unusual ways of learning and paying attention, and impaired verbal and non-verbal communication skills. In addition to these behavioral symptoms, individuals with autism will often have physical ailments such as asthma, digestive disorders, persistent viral infections and epilepsy.

Signs and symptoms of ASD begin before age three and last throughout life. ASD occur in all racial, ethnic and socioeconomic groups, and are almost five times more likely to occur in boys than girls. The Centers for Disease Control and Prevention (CDC) estimate that one in 68 children in the United States have an Autism Spectrum Disorder. Currently there is no cure for autism, but early detection and treatment can greatly improve symptoms and development.

Significant debate exists over the causes of autism. Scientists believe that both genes and environment play a role in the development of ASD, noting that environmental factors may trigger the expression of certain genes. Research exploring a possible link between thimerosal in vaccines and autism has shown no causal connection between the two. As a precaution, in 1999, the Public Health Service agencies, the American Academy of Pediatrics, and vaccine manufacturers agreed that thimerosal should be reduced or eliminated in vaccines for infants, and since 2001 thimerosal has not been used in routinely recommended vaccines, with the exception of small amounts in the influenza (flu) vaccines. For more information about mercury and immunizations, please click here.

According to the Autism Society more than 3.5 million Americans live with an ASD. This growing population often needs additional health, educational and caregiving services. The annual U.S. cost for treating adults and children with autism, including special education and residential care, is an estimated $236 billion – $262 billion annually, according to the 2014 study by the University of Pennsylvania’s Perelman School of Medicine.

Several federal actions have been taken in the last decade in response to the rising rates, and costs, of autism. The Children’s Health Act of 2000 established the National Center on Birth Defects and Developmental Disabilities at the CDC and authorized the establishment of Centers of Excellence at both CDC and the National Institutes of Health (NIH) to promote research and monitoring efforts related to the causes, diagnosis, early detection, prevention, and treatment of autism.  The federal Combating Autism Act enacted in 2006 provided funding for autism spectrum disorder and developmental disabilities research, screening, treatment and education. The Act established a federal advisory committee, the Interagency Autism Coordinating Committee (IACC) to develop a plan for the conduct of, and support for, autism spectrum disorder research. The IACC releases annual strategic plans for autism research.  In August 2014, the committee was reauthorized under the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2014 (Public Law 113-157). This authorization will remain effective until September 30, 2019.

According to Easter Seals, states have adopted various (cheap bureaucratic) strategies to address the needs of individuals with autism:

  • Thirty-six states established a task force or commission.
  • Twenty-seven states have an active legislative standing committee to address autism needs and policies.
  • Thirteen states created a bureau or agency to administer or coordinate autism services.
  • Some states, including Arkansas, New Hampshire, New Jersey and Utah developed registries to track diagnoses and treatment.

Click here to read more about insurance coverage for autism.


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