States Connecticut

Resources:

For more information on the CT Newborn Screening Program see: https://portal.ct.gov/newbornscreening

For more information on the CT Newborn Screening Network see:

https://www.connecticutchildrens.org/specialties-conditions/connecticut-newborn-screening-network 

Opt-Out:

If newborn screening is in conflict with the parents’/guardians’ religious beliefs, they may choose to refuse screening. Birth hospital staff or a midwife will provide information about the benefits and risks of screening and not screening to the parents/guardians before asking the parent/guardian to sign a waiver form. The signed form is kept with the medical record and a copy is sent to the CT NBS Program.

Support for families:

One of the concerns a family may have when they find out their child has a condition detected through newborn screening, is how to pay for the treatment that their child needs.  Fortunately, Connecticut has laws and programs which make treatment of these conditions more affordable for families.

Medical Formula and Food

Insurance companies are required to cover prescribed metabolic formulas/foods used to treat some conditions detected through newborn screening.  While there may be a co-payment, deductible or other cost-sharing, these life-saving formulas will be treated the same way as other outpatient prescription drugs in your plan.

The State of Connecticut also provides money to treatment centers specializing in treating children with metabolic disorders, to provide metabolic formulas/foods at a free or reduced cost to families without medical insurance or who experiencing financial hardship.

Children & Youth with Special Health Care Needs (CYSHCN) 

CYSHCN is a service available for families of children who have or are at risk for a chronic physical, developmental, behavioral, or emotional condition and require special services beyond what is required for most children. Children who have a condition identified through newborn screening may be eligible to receive care coordination and other services through CYSHCN.

Directions is a guide to help you plan and coordinate care for your child with special health care needs. In Directions, you will find ways to organize your child’s health information, information about caring for your child’s special needs, resources, and tips from other parents of children with special health care.

Connecticut Birth to Three Program

The Connecticut Birth to Three Program may also provide developmental and health-related services to children identified with a condition through the newborn screening. 

Storage and Use of Dried Blood Spots:

When bloodspot screening is complete, a very small amount of blood is sometimes left over. The leftover blood will be stored at the CT Public Health Laboratory to allow for any necessary follow-up testing, to help make sure screening is accurate, and to develop new newborn screening tests for Connecticut. Leftover bloodspots are not used for research unrelated to newborn screening.  If you have any questions about this, please contact the CT NBS Program at 860-920-6628. The residual dried blood spot is kept by the CT NBS Program for a minimum of 2 years before being destroyed. Records of screening tests are kept at the State Laboratory for a minimum of 5 years before being destroyed.  Following the required minimum 6-month retention period, residual dried blood spot specimens may be destroyed or returned at the request of the patient or patient’s legal representative by completing this form (link to form).   

The CT Newborn Screening Program does not carry out DNA sequencing at the State Public Health Laboratory and will never sell residual dried bloodspots or release any portion of the residual dried blood spot specimen unless authorized by the patient or patient’s legal representative to do so.

To see a copy of the blood spot card used in Connecticut click here.

To see a copy of Connecticut’s request to destroy or return NBS dried blood spot screening sample click here.