Autism Registry

[Guest guest]

Hello,

Below is the public announcement on the New Jersey Autism Registry and the

Public Comment Period. ASAN has been asked to submit our thoughts on this to

the New Jersey Department of Human Services, where we do have some

pre-existing relationships that will make for meaningful consideration of

our point of view. This is a real opportunity to communicate what we want

and develop a document that we can utilize as a model for other

jurisdictions that adopt similar registries. What do you think should be

included in our public comment? Feel free to copy this inquiry to other

listservs and forums, requesting that people on communities this has been

forwarded to respond directly to me at aneeman@...

Regards,

Ari Ne'eman

President

The Autistic Self Advocacy Network

1660 L Street, NW, Suite 700

Washington, DC 20036

http://www.autisticadvocacy.org

Department of Health and Senior Services Proposes New Rules and Amendments

at N.J.A.C. 8:20, which establishes the Birth Defects Registry

The Division of Family Health Services in the Public Health Services Branch

of the Department of Health and Senior Services proposes new rules and

amendments at N.J.A.C. 8:20, which establishes the Birth Defects Registry.

The proposal would establish an autism registry and a severe neonatal

jaundice registry.

This proposal would require health care professionals to report diagnoses of

autism in children from birth through twenty-one years of age. N.J.S.A.

26:2-187 requires the Department of Health and Senior Services to implement

the reporting of autism and to establish an autism registry. Autism is a

developmental disorder of brain function that is typically manifested by

impaired social interaction, problems with verbal and nonverbal

communication and imagination, and unusual or severely limited activities

and interests.

Under the proposal, health care professionals would not report the personal

identifying information of a child diagnosed with autism if the child's

parent, legal guardian or custodian objects to the reporting of this

information, or if the individual through age twenty-one who is diagnosed

with autism objects to the reporting. Health care professionals would be

required to inform the parent, legal guardian, custodian or individual

through age twenty-one of the right to refuse to report identifying

information.

The proposal would require clinical laboratories to report newborns with

severe neonatal jaundice, a condition that is caused by a buildup of

bilirubin, an orange-yellow pigment found in bile. Toxic levels of

bilirubin can cause severe neurological damage called kernicterus. N.J.S.A.

26:8-40.21 requires the Department to establish a severe neonatal jaundice

registry.

The proposal would also make the reporting requirements for congenital

conditions more consistent with the Centers for Disease Control and

Prevention (CDC) Guidelines, and extend the reporting requirements for

congenital conditions from birth through five years of age.

Under the proposal, the information on individuals with these conditions

that is reported to these registries would remain confidential. The data

contained in these registries would be used for public health research,

needs assessments, and public health investigations.

The notice of proposal appears in the November 17, 2008 issue of the New

Jersey Register.

The public has until January 16, 2009 to comment on the proposals. Persons

wishing to comment on the proposals must submit their comments in writing to

Ruth Charbonneau, Director, Office of Legal and Regulatory Affairs, New

Jersey Department of Health and Senior Services, PO Box 360, Trenton, NJ

08625. Written comments on the proposals must be postmarked on or before

January 16, 2009, which is the close of the 60-day public comment period for

the proposals.

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