A2306

An Act establishing an Autism Registry in the Department of Health and Senior Services, supplementing Title 26 of the Revised Statutes and making an appropriation.

Be It Enacted by the Senate and General Assembly of the State of New Jersey:

1. The Legislature finds and declares that:

a. Autism is a developmental disorder of brain function which is typically manifested in impaired social interaction, problems with verbal and nonverbal communication and imagination, and unusual or severely limited activities and interests. These symptoms generally appear during the first three years of childhood and continue throughout life, often taking devastating emotional and financial tolls on the family of the autistic child.

b. Best estimates indicate that one in 500 children born in the State will be diagnosed with an autism spectrum disorder and that 12,000 individuals in the State have autism or an autism spectrum disorder. However, these numbers may be understated because of current diagnostic procedures and reporting requirements. There is a clear need for greater accuracy in reporting as well as for information on the epidemiologic data on the incidence and prevalence of autism in this State.

c. The State currently requires that a number of other conditions, including cancer and certain birth defects, be reported and maintained in a central registry. A similar registry for autism is needed to improve current knowledge and understanding of autism, to conduct thorough and complete epidemiologic surveys of the disorder, to enable analysis of this problem and to plan for and provide services to children with autism and their families.

2. a. A physician, psychologist and any other health care professional licensed pursuant to Title 45 of the Revised Statutes who is qualified by training to make the diagnosis and who then makes the diagnosis that a child is affected with autism shall report this diagnosis to the Department of Health and Senior Services in a form and manner prescribed by the Commissioner of Health and Senior Services.

b. The report shall be in writing and shall include the name and address of the person submitting the report, the name, age and address of the child diagnosed as having autism, and other pertinent information as may be required by the commissioner.

3. The Department of Health and Senior Services, in consultation with the Department of Human Services, shall establish and maintain an up-to-date registry which shall include a record of all reported cases of autism that occur in New Jersey and any other information it deems relevant and appropriate 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.

4. a. The reports made pursuant to this act are to be used only by the Department of Health and Senior Services and other agencies as may be designated by the Commissioner of Health and Senior Services, 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 to public inspections pursuant to P.L.1963, c.73 (C.47:1A-1 et seq.) or P.L.2001, c.404 (C.47:1A-5 et al.).

b. A physician, psychologist or health care professional providing information to the department in accordance with this act shall not be deemed to be, or held liable for, divulging confidential information.

c. Nothing in this act shall be construed to compel a child who has been reported as affected with autism to submit to medical or health examination or supervision by the department.

5. There is appropriated from the General Fund to the Department of Health and Senior Services $500,000 to effectuate the purposes of this act.

6. The Commissioner of Health and Senior Services shall adopt rules and regulations pursuant to the "Administrative Procedure Act," P.L.1968, c.410 (C.52:14B-1 et seq.) to effectuate the purposes of this act.

7. This act shall take effect 90 days after enactment, but the Commissioner of Health and Senior Services may take such anticipatory administrative action in advance as shall be necessary for the implementation of this act.

STATEMENT

This bill would require physicians, psychologists and any other licensed health care professionals, who by virtue of their training are qualified to make a diagnosis of autism, to report such diagnoses in a form and manner prescribed by the Commissioner of Health and Senior Services. The report is to be in writing and is to include the name and address of the person making the report, as well as the name, age and address of the child diagnosed as having autism and other pertinent information which may be required by the commissioner.

The bill would further require the Department of Health and Senior Services (DHSS), in consultation with the Department of Human Services (DHS), to establish and maintain an up-to-date registry which would include a record of all reported cases of autism that occur in New Jersey along with any other information it deems relevant and appropriate to conducting thorough and complete epidemiologic surveys of autism. The ultimate goal of the registry is to enable analysis of the problem of autism and to plan for and provide services to children with autism and their families. The bill appropriates $500,00 for purposes of establishing and maintaining the registry.

The bill provides that any reports made to the registry are to be used only by DHSS and other agencies as may be designated by the Commissioner of Health and Senior Services, including DHS, and that the reports are not otherwise to be divulged or made public so as to disclose the identity of any person to whom they relate. To that end, the bill stipulates that the reports shall not be included under materials available to public inspection pursuant to N.J.S.A.47:1A-1 et seq. or N.J.S.A.47:1A-5 et al.

The bill further states that a physician, psychologist or other licensed health care professional required to report diagnoses of autism to the registry shall not be deemed to be, or held liable for, divulging confidential information. Finally, the bill provides that nothing in the act is to be construed to compel a child who has been diagnosed with autism to submit to medical or health examination or supervision by DHSS.