The New Jersey Autism Registry was created in 2007 with the aim of improving access to autism services in the state. However, while the registry is intended to benefit those with autism, we find that some families have concerns about this. Therefore, we’ve written a brief guide to the NJ autism registry for parents.
What’s the purpose of the registry?
The NJ autism registry has two purposes. Firstly, it connects families to specialist child health management services provided at the county level, as well as other autism support groups and resources. Many of these services are free to use, but you must be registered in order to access them.
Secondly, it’s used to provide insight and statistical data on the rate of autism diagnosis within New Jersey. This helps the state to better forecast demand for services and make more informed decisions.
Who’s added to the registry?
All New Jersey residents under the age of 22 who are diagnosed with ASD.
How do I register my child?
Your primary health care provider and/or the diagnosing doctor will add your child to the registry. Health care professionals should be proactive with this. However, you can facilitate this by informing them of it if they haven’t discussed it with you in the immediate sessions after a diagnosis. They must obtain a signed written statement from you before they add your child to the registry.
Once your child is registered, you will receive informational documents in the post, detailing the services in your area that you can access.
Can I refuse to have my child registered?
No, the registry is mandatory. You can, however, request an anonymous registration. But if you choose to do this then you will not have access to the services discussed above.
Is the data confidential?
Yes, all data is kept confidential and is not shared with any other government agencies or organizations, other than to facilitate access to the service mentioned above.
Is this the same thing as the New Jersey Autism Mandate?
No, this is a separate piece of legislation that provides protection for families when accessing autism services through their health insurance policies. You can read our guide to the New Jersey Autism Mandate for more information on this.
How do I find out more information?
The New Jersey Department of Health website provides more information about the registry here.