The state of New Jersey has proposed a mandatory statewide autism registry similar to the registry it has for children born with congenital disabilities. The idea of the registry is to help direct families of autistic children to the help and services they need.
New Jersey already has a special-needs register, but it's optional and it covers all forms of special needs. A register specifically for autistic people would be able to provide more specialized services and care for those who need it.
"The goal has always been to identify possible clusters or issues with different parts of the state," says Gloria Rodriguez, who directs the Special Child Health and Early Intervention Services for New Jersey's Department of Health and Senior Services.
Because the registry would allow parents to withhold information that could specifically identify their families, it would still be possible to opt out of services, but health care professionals would be required to report any autism diagnoses in children.
One problem in the plan is a disturbingly common problem in the autism community: the registry would only list children diagnosed before age 21, making it harder for those people diagnosed as adults to receive services, should they need them.
Certain disability advocates have wondered about the repercussions of acts such as this, arguing that they often lead to governmental abuse of power and citing cases such as the family denied Australian residency for having a child with Down Syndrome and the Roma woman who was sterilized against her will because she was Roma. Others argue that the potential good such a list can do -- bringing support to children and families who need it -- outweighs the risks.
The discussion period is open to the public until January 16, 2009. To make the New Jersey government aware of your thoughts on the matter, send your comments to:
Ruth Charbonneau, Office of Legal and Regulatory Affairs, New Jersey Department of Health and Senior Services, P.O. Box 360, Trenton, NJ 08625.
photo credit: Image Editor
