State proposes a mandatory autism registry
By BEN LEACH
Staff Writer, 609-272-7261
Published: Tuesday, November 18, 2008
The state's first mandatory autism registry was proposed by the state's Department of Health and Senior Services on Monday.The registry, proposed as an amendment to the long-standing birth-defects registry, would require health care professionals to report those diagnosed with autism at any time from the day they were born through their 21st birthday.Although autism is a developmental disorder not a birth defect, the state is taking a similar approach as with its successful birth-defects registry: It wants to apply the same mandatory approach to autism.Children with autism can currently be registered with the state's special-needs registry, but it's done on a voluntary basis."The goal has always been to use this information to identify possible clusters or issues with different parts of the state," said Gloria Rodriguez, director of the Special Child Health and Early Intervention Services for the Department of Health and Senior Services.
Rodriguez said the purpose of the registry is to connect people with autism in New Jersey to state-provided social- and economic-assistance services. She said earlier access to services for people with autism usually leads to better outcomes later in life.While autism advocacy groups and the public need time to review the proposed amendment, many hope the proposal further addresses some of the concerns families have regarding autism support."Hopefully, this is one step towards really planning the needs for the autism community," said Leslie Long, director of public policy and systems advocacy for Autism New Jersey, formerly the New Jersey Center for Outreach and Services for the Autism Community.Though mandatory, the proposed amendment would allow parents or guardians to choose to withhold personal information, such as names and addresses. Rodriguez said nonspecific information would still be required - essentially making the person just one more number in the total autism population - but its usefulness would be limited because it would block outreach.E-mail Ben Leach:BLeach@pressofac.comTo commentA 60-day public comment period on the autism registry is open until Jan. 16. The state will not accept e-mails. Comments can be sent to: Ruth Charbonneau, director of the Office of Legal and Regulatory Affairs, New Jersey Department of Health and Senior Services, P.O. Box 360, Trenton, N.J. 08625. The comments and their responses will be published in the state register after the period ends. The register can be accessed through most libraries, according to the DHSS.
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