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First Published Tuesday, 9 December 2008

New Jersey at sunrise
Fwd:

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@autisticadv ocacy.org


Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autistic advocacy. org
732.763.5530


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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