New Jersey Administrative Code
Title 8 - HEALTH
Chapter 20 - BIRTH DEFECTS REGISTRY
Subchapter 2 - AUTISM
Section 8:20-2.3 - Reporting requirements

Universal Citation: NJ Admin Code 8:20-2.3

Current through Register Vol. 56, No. 6, March 18, 2024

(a) A health care professional shall report to the Department any person, from birth through 21 years of age, who is a resident of the State of New Jersey and is diagnosed with autism based on DSM criteria, and who is not known to be previously registered.

(b) The health care professional shall send the report required by (a) above to the Department on the SCH-0 form available on the Registry website at http://www.state.nj.us/health/fhs/sch/schr.shtml, either electronically, as described on the website, or by mail to the following address: Special Child Health and Early Intervention Services

Early Identification and Monitoring/Autism Registry

PO Box 364

Trenton, New Jersey 08625-0364

(c) The administrative officer of every health care facility shall establish procedures for reporting to the Department the information required by (d) below for any person from birth through 21 years of age who is diagnosed with autism.

(d) The report shall be in writing on the SCH-O form and shall include the name, age, race/ethnicity, and address of the person with the diagnosis of autism, registration type, insurance information, child's birth information, diagnosis information, diagnostician's information and contact information for the person submitting the form.

(e) Pursuant to N.J.S.A. 26:2-188c, nothing in this act shall be construed to compel a child with the diagnosis of autism who has been reported to submit to medical or health examination or supervision by the Department.

(f) Every health care facility and independent clinical laboratory shall allow access to, or provide necessary information on persons with autism for any studies conducted by the Department after appropriate review for assuring protection of human subjects by the Department's Institutional Review Board.

(g) Any agency designated by the Commissioner to receive autism reports shall send to the Department, in the manner prescribed in (b) above, any updated diagnostic and/or demographic information in writing on the SCH-O form.

(h) A health care professional shall not report to the Department the personal identifying information of a child diagnosed with autism if the child's parent, legal guardian or custodian objects to the reporting and a health care professional shall not report to the Department the personal identifying information of an individual through age 21 diagnosed with autism, if the individual through age 21 objects to the reporting.

(i) At the time of diagnosis or prior to submitting the report required by (b) above, the health care professional shall inform the parent, legal guardian, custodian or individual through age 21 of the right to refuse to report identifying information to the Autism Registry and shall provide the parent, legal guardian, custodian or individual through age 21 with a written statement that includes the following:

1. A parent, legal guardian, custodian or individual through age 21 diagnosed with autism who refuses to report identifying information to the Autism Registry must sign the statement;

2. The statement shall become part of the permanent medical record; and

3. When a parent, legal guardian, custodian or individual through age 21 diagnosed with autism refuses to provide identifying information, the diagnosed individual's sex, county of residence, race, ethnicity, month and year of birth, diagnosis and the diagnostician information shall be submitted to the Autism Registry.

(j) When a person is registered, the Department shall inform the following individuals of the registration:

1. The parent, legal guardian or custodian if the person is 18 years of age or less;

2. The parent, legal guardian or custodian if the person is over 18 years of age and is under the care of the parent, legal guardian or custodian; or

3. The person over 18 years of age who is living independently.

(k) A health care professional shall report to the Department any person, from birth through 21 years of age, who has been diagnosed with autism and who has expired.

(l) The Department, in consultation with the Department of Human Services, shall maintain an up-to-date registry, which shall include a record of all reported cases of Autism that occur in New Jersey in order to conduct thorough and complete epidemiologic surveys of autism, to enable analysis of this problem, and to plan for and provide services to children with autism and their families.

(m) In accordance with N.J.S.A. 26:2-188b, a physician, psychologist or health care professional providing information to the Department shall not be deemed to be, or held liable for, divulging confidential information.

(n) The reports made pursuant to this section shall be used only by the Department and other agencies as may be designated by the Commissioner, including the Department of Human Services, and shall not otherwise be divulged or made public, so as to disclose the identity of any person to whom they relate; and, to that end, the reports shall not be included under materials available for public inspection pursuant to the "Open Public Records Act," 47:1A-1 et seq.

Disclaimer: These regulations may not be the most recent version. New Jersey may have more current or accurate information. We make no warranties or guarantees about the accuracy, completeness, or adequacy of the information contained on this site or the information linked to on the state site. Please check official sources.
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