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Measure Would Create Centralized System to Assist State
In Helping Children & Adults with Autism
(WEST WINDSOR) - The Governor today signed into law legislation Assemblyman John F. McKeon sponsored to create a statewide centralized autism registry to identify the scope of autism in New Jersey so the state can provide better services and care for children and adults with autism and their families.
"New Jersey has the nation's highest reported rates of autism and this presents new challenges for families, schools and our state's health-care network," said McKeon (D-Essex). "This registry will serve as an invaluable tool for the state to monitor autism cases while ensuring that New Jersey continues to provide services to meet the needs of the state's growing autism community."
Assembly Speaker Joseph J. Roberts, Jr. (D-Camden), Assemblyman Nelson Albano (D-Cumberland/Cape May/Atlantic) and Assemblywoman Joan Voss (D-Bergen) also joined in sponsoring the McKeon-led autism registry law.
The measure (A-2306) was included in a sweeping legislative package Speaker Roberts initiated earlier this year to improve the detection, treatment, and public awareness of autism in New Jersey.
The Governor signed elements of the package into law during a ceremony at the Eden Institute, a non-profit autism service agency in Mercer County. The event was attended by legislators, representatives of autism advocacy groups, and families who have loved ones with autism.
The new law appropriates $500,000 to support a registry that will enable the state to better analyze autism and assist in the proactive and long-term planning of programs and services for autistic residents and their families.
The law requires physicians, psychologists and all licensed health care professionals who are qualified to diagnose autism to report every case of autism they diagnose to the state Department of Health and Senior Services (DHSS), including a listing of a respective individual's place of birth.
Under the law, written reports are to be submitted to state, including all vital information for the health care professional who diagnosed a resident with autism, as well as the name, age and address of the child diagnosed and any additional information that may be required by the commissioner of the DHSS.
The parent or guardian of a child with autism may request that any identifying information not be reported to DHSS. Officials also would be required to keep a record of each reported case of autism in which an original diagnosis is lost, changed, or considered misdiagnosed.
Health care professionals who provide information for the registry would not be held liable for divulging any confidential information.
McKeon said the need for a significant increase in autism services was underscored by a February federal Centers for Disease Control and Prevention's study that found New Jersey to have the nation's highest reported rate of autism - one of out of every 94 children. The national rate is one out of 150 children.
"These statistics show that New Jersey is facing a growing challenge," said McKeon. "New Jersey must remain steadfast as a national leader in taking decisive action to provide autistic residents and their families the vital services that they need."
The cause of autism remains unknown. It is a disorder that impairs the central nervous system, compromising an individual's ability to listen, speak, and form social relationships. The condition often is marked with highly focused, repetitive behavior.
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