States California

Opt-Out:

A parent or guardian of the newborn child may only decline newborn screening based on the objection that it conflicts with their religious beliefs or practices. They must then sign a test refusal form.

Support for families:

One of the concerns some families have when they find out their child has a genetic disease is the cost of care. Fortunately, California has many programs in place to help lessen the financial burden on a family caring for a child with these conditions.

For eligible families, the California Children’s Services (CCS) program covers diagnostic testing and treatment services, medical case management, and physical and occupational therapy services to children under age 21 with CCS-eligible medical conditions.   All conditions detected by newborn screening are CCS-eligible. The CCS program is administered as a partnership between county health departments and the California Department of Health Care Services (DHCS).

Also, Medi-Cal and private insurers in California must cover nutritional supplements and replacements if they are used as a therapy to prevent a serious disability or used for a child with a condition that requires a special diet.

Storage and Use of Dried Blood Spots:

California, like many other states, stores residual dried blood spots. After newborn screening has been completed, the filter paper cards with the residual dried blood spots are labeled with a unique bar code but no other identifying information.

The Newborn Screening Program uses residual blood spots: for quality control testing to ensure the testing validity, to evaluate and improve the current screening program, and to develop new tests to add to the panel.  In addition, California law requires the program to make the samples available to approved investigators for studies of diseases in women and children.

You may request that your baby’s blood sample should not be used for research or be destroyed by contacting the Newborn Screening Program.