The state has launched an electronic autism registry designed to make it easier for families of children with autism and other special health care needs to be connected to the appropriate support services in their cities and towns, Gov. Jon Corzine announced Thursday.
The New Jersey autism registry requires psychiatrists, psychologists, neurologists and other medical professionals to register the children they are diagnosing with autism and birth defects such as Down syndrome, cleft palate and heart or muscular defects.
"Diagnosis and treatment of autism spectrum disorders has long been a top priority in New Jersey," Corzine said. "Through this registry, families will be referred to appropriate resources in their own communities so they can get the best treatment and care for their children's special needs."
Corzine and state Health Commissioner Heather Howard made the announcement during a roundtable discussion with parents of autistic children today at the Douglass Developmental Disability Center in New Brunswick."The New Jersey Autism Registry is a great advancement in the state's ability to accurately identify the prevalence of autism and that will enable us to better serve these families in the future with the most appropriate array of services," Howard said.
Earlier this week, the federal Centers for Disease Control released a study which revises the national prevalence rate of autism from an earlier national estimate of 1 in 150 to the new estimate of 1 in 100 for children between the ages of 1 and 17. New Jersey's prevalence rate is 1 in 94.
Howard said the information on the registry is confidential. It is used to refer families to services and to enable state officials to more effectively plan for future needs of New Jersey's families with autism and other special needs. Research has indicated that early intervention services, which include speech, physical and occupational therapy, help the majority of young children with autism and other developmental disabilities to learn important skills.
Before the electronic registry opened, approximately 50 of the state's hospitals, which offer birth and delivery services, were trained in the use of the registry system. Staff of New Jersey's six Autism Centers of Excellence, which are funded by the state Autism Council, also were trained in use of the registry.
Earlier this summer, Corzine signed legislation requiring insurance companies t o cover certain therapeutic services and behavioral intervention as it relates to autism and other developmental disabilities. Insurance companies are required to provide up to $36,000 per year for medically necessary behavioral early intervention for all patients with autism, and with other developmental disabilities, who are under 21 years of age. Of 15 states, New Jersey is the first to include other developmental disabilities along with autism in this type of insurance legislation.
Autism is a spectrum of disorders that are complex and lifelong. It is a biologically based disorder that affects the development and functioning of a person's verbal and non-verbal communication skills, social interactions and behavior patterns.
In 2007, Corzine signed a package of bills designed to improve autism treatment, training, education and research in the state. These measures resulted in mandated autism guidelines for healthcare professionals; transfer of the state Council on Medical Research and Treatment of Autism to the Department of Health and Senior Services; funding of the Centers of Excellence; development of autism and developmental disabled training for first responders and creation of the Adults with Autism Task Force.
Autism affects people of all races, ethnicities and socio-economic groups and is four times more likely in boys than girls. There are no biological markers or tests that detect autism. Clinicians make the diagnosis based on information from the parents and observation of the child.
Assembly Speaker Joseph J. Roberts (D-Camden), who sponsored the law that created the registry, hailed its launch as another key step toward combating New Jersey's highest-in-the-nation autism rate.
"We've long had a clear need for more accurate reporting and information on the prevalence of autism in New Jersey," Roberts said. "We've made great strides toward improving our autism diagnosis and treatment, yet there's so much we still don't know about this mysterious disability.''
Roberts noted the state already requires require conditions such as cancer be maintained in a central registry.
"Doing the same for autism and birth defects will improve our knowledge, understanding and analysis and enhance the services provided to children and their families," he said. "This registry is a sensible step forward that will help boost the research and services that will allow our children with special needs to fulfill their great potential."
– TOM HESTER SR., NEWJERSEYNEWSROOM.COM
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