In this Section:
What conditions are screened for in Florida?
Amino Acid Disorders
Fatty Acid Oxidation Disorders
Organic Acid Conditions
About Newborn Screening in Florida
Most babies arrive into the world healthy. However, Florida screens all babies for various conditions soon after birth because a few babies look healthy but have a rare health problem. Before you leave the hospital, a few drops of blood will be taken from your baby’s heel. The hospital will send the blood sample to the Florida Newborn Screening Lab in Jacksonville. All results are sent back to the hospital or birthing center. Your baby’s doctor will be given the results by the hospital or he/she can obtain the results from the Florida Newborn Screening Results (www.fnsr.net) website. If the screening process can find problems early, qualified health care professionals in Florida may prevent serious problems like intellectual disability or death from happening to your newborn.
Since early detection and treatment are so important with these conditions, be sure to tell the hospital the correct name and phone number of your baby’s doctor so they can reach you if your newborn’s screening results are abnormal. If your doctor does contact you, it does not mean that your newborn has the condition but it is important that you follow their instructions immediately in order to determine if treatment will be necessary. If you do not hear from your doctor, make sure you ask about the results when you see your newborn’s doctor for their first appointment.
How is Newborn Screening Paid for in Florida?
Newborn Screening services in Florida are jointly funded through a $15.00 fee paid by birthing facilities for each live birth and the billing of the newborn screening tests performed by the State Laboratory. Medicaid and private insurance companies are billed but the Florida Newborn Screening does not bill families without insurance coverage.
Policies and Resources
While it is not encouraged, parents may refuse newborn screening for their newborn for any reason. The person responsible for collecting the specimen must collect a written refusal from the parent that must be put in the medical 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 increase in health care costs. Fortunately, Florida has many 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 health insurance, the insurance must cover enteral formulas to treat certain inherited diseases and up to $2,500 annually for low protein modified foods to treat amino acid disorders and organic acid disorders until the age of 24. There may be an additional premium or co-pay for this medical food coverage.
If your child is not insured and all other payment and service options have been exhausted, Florida’s health department can help. The program can supply necessary dietary treatment for PKU and other metabolic diseases as medically indicated.
In addition to insurance regulations, Florida gives its residents access to Children's Medical Services, which is a collection of special programs for eligible children with special needs. They have a variety of services for expecting moms, newborn babies, infants and toddlers, school-aged children, adolescents and young adults. All of their services are provided by highly qualified physicians, nurses, social workers and other health care providers around the state. Through our family-centered programs, they make sure your child gets the care he or she needs.
The CMS Network also provides health insurance coverage for children with special needs who have no insurance or who are under-insured for their condition. CMS Network eligibility is based on the child's age, clinical condition, and the family's income. The CMS Network is one of four Florida KidCare Program options. Families who meet the eligibility requirements for Title XIX Medicaid or Title XXI KidCare and whose child has a special health care need qualify for the CMS Network health benefits package. To see if your child would qualify for CMS’s services, visit here [http://www.cms-kids.com/families/health_services/eligibility.html].
Storage and Use of Dried Blood Spots:
After your newborn has been screened for all conditions, both the blood specimen and the related information will remain for a designated period of time. The laboratory must maintain records of screening results and follow-up testing for 6 years. Storage of the blood specimen is six months, then the specimen is destroyed. The health department must safeguard all information sufficiently to ensure the confidentiality of individuals in the program.