In this Section:
What conditions are screened for in Connecticut?
Amino Acid Disorders
Fatty Acid Oxidation Disorders
- State preferred name: carnitine palmitoyltransferase deficiency- type IA
Organic Acid Conditions
About Newborn Screening in Connecticut
Connecticut State Law mandates that all newborns delivered in Connecticut be screened for selected genetic and metabolic disorders. The Newborn Screening Program consists of three components: Testing, Tracking, and Treatment.
The aim of this program is to screen all babies born in Connecticut prior to hospital discharge or within the first 4 days of life and the goal is early identification of infants at increased risk for selected metabolic or genetic diseases so that medical treatment can be promptly initiated to avert complications and prevent irreversible problems and death.
Specimens are tested at the Department of Public Health (DPH) State Laboratory and all abnormal results are reported to the DPH Tracking Unit who reports the results to the primary care providers and assures referrals are made to the State funded Regional Treatment Centers.
The Regional Treatment Centers provide comprehensive testing, counseling, education, treatment, and follow-up services for those newborns with abnormal screening results. The Tracking Unit then coordinates and provides educational programs, guidelines, protocols, materials, and technical assistance for birthing facilities staff, primary care providers, and health professionals and provides telephone technical assistance for families and the general public.
How is Newborn Screening Paid for in Connecticut?
The newborn screening fees are charged to institutions to cover all expenses of the comprehensive screening program including testing, tracking, and treatment. The fees are a minimum of $56.00.
Policies and Resources
If the parents of an infant object in writing to the screening process because it is in conflict with their religious tenets and practice, they must object in writing. This objection is reported to the state department of health and a statement on a form provided by the state department of health signed by the parents shall be made a part of the infant's hospital record.
Support for families:
One of the concerns some families may have when they find out their child has a condition detected through the newborn screening program is the possible increase in health care costs. Fortunately, Connecticut has laws and programs which have been put in place to make treatment of these conditions more affordable for families who are looking to provide the best care to their loved ones.
If your child is covered by private insurance, individuals and group health insurance policies must cover prescribed amino acid modified preparations and low protein modified food products. While there may be a co-payment, deductible or other cost-sharing process, the life-saving formulas will be treated the same way as all other outpatient prescription drugs are treated under your plan.
If your child is not insured, the state of Connecticut allows the department to purchase a special infant formula, amino acid modified preparations, and low protein modified food products directly for those who need it.
Children & Youth with Special Health Care Needs (CYSHCN) is a state service available for those who have or are at increased risk for a chronic physical, developmental, behavioral or emotional condition and require health and related services beyond that required for children in general, such as some who are identified through the newborn screening process. All families of eligible children and youth with special health care needs (CYSHCN), regardless of income, will receive a respectful working partnership with you and your child’s medical home; care coordination services and family support referrals. Uninsured or underinsured families, who fall within income guidelines, can also benefit from payment for limited services (i.e. durable medical equipment, prescriptions, and special nutritional formulas). For contact information, view the Connecticut Medical Home Initative PDF.
Also, Directions is a guide to help you plan and coordinate care for your child or adolescent 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.
Storage and Use of Dried Blood Spots:
After your child has been screened for all conditions in Connecticut, there will remain a little bit of blood on the specimen card called a “residual dried blood spot” as well as records of screening tests. The records will be stored by Connecticut for 5 years.