How you can help?
All licensed health care providers, licensed according to Title 45 of the New Jersey statute, are mandated to register children with autism to the Autism Registry. Providers can register either electronically, if they have access to the web-based system, or by completing the hard copies of the SCH-0 and the SCH-1 forms.
By registering, you can help families obtain better care and services. The Autism Registry links families to coordinated community-based care through the Special Child Health Services Case Management Units.
- Once a child is registered, a letter and informational pamphlets are sent to the parent or legal guardian named on the registration, notifying them that the child has been registered.
- A case manager will then contact the family to inform them of available family-centered services in their community.
- These case managers will assist with referrals as well as obtaining community resources at no cost to the families.
By registering children to the Autism Registry as part of your standard practice, you and your staff are opening up many service opportunities for these families.
Who should you register?
Providers must register any child with autism who:
- is part of their active panel,
- lives in New Jersey, and
- is under the age of 22.
The Autism Registry defines autism in accordance with the DSM IV- TR criteria of Pervasive Development Disorders, which includes:
- Autistic Disorder,
- Asperger’s Syndrome,
- Pervasive Developmental Disorder- Not Otherwise Specified,
- Rett’s Disorder, and
- Childhood Disintegrative Disorder.
Before registering the child, providers must INFORM families of the Autism Registry and give parents/guardian the choice of being registered without identifiable information. However, if a family decides to register without identifiable information, providers must:
- Inform them that they will not be linked to special child health case management services automatically.
- Obtain a signed written statement from the parents/guardians saying they chose to be registered without identifiable information and make that statement part of the child’s permanent medical record.
Does HIPAA apply here?
No, it does not. Because the Autism Registry is mandatory, created through a State law, HIPAA does not apply. Please visit HIPAA Privacy Rules for more information and how it relates to State law.
For more information about the Autism Registry and how it relates to providers,