States Kentucky

Conditions Screened

Kentucky currently screens for 62 conditions

The Kentucky Program

Each state runs its program differently, for more detailed information please visit their website here.

Download Brochure

Here is a brochure for the state of Kentucky.
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What Conditions are Screened For in Kentucky?

Hemoglobin Disorders

Lysosomal Storage Disorders

Contacts

Kentucky Newborn Screening Program

Kentucky Department for Public Health
275 E. Main St. HS2W-A
Frankfort, KY 40621
Phone: 502-564-2154
Toll Free: 800-462-6122
Fax: 502-564-1510
https://chfs.ky.gov/agencies/dph/dmch/cfhib/Pages/newbornscreening.aspx

Newborn Screening Laboratory

Molecular and Clinical Chemistry
Kentucky Department for Public Health
100 Sower Boulevard Ste 204
Frankfort, KY 40601
Phone: 502-564-4446
Fax: 502-564-2905

Follow-Up Program

Kentucky Newborn Screening
Kentucky Department for Public Health
275 East Main Street HS2W-A
Frankfort, KY 40621
Phone: 502-564-2154 
Fax: 502-564-1510

Early Hearing Detection and Intervention

Office for Children with Special Health Care Needs
310 Whittington Parkway, Suite 200
Louisville, KY 40222
Phone: 502-429-4430
Fax: 502-429-4489
Website: https://chfs.ky.gov/agencies/ccshcn/Pages/newbornscreening.aspx

Search Educational Resources

Looking for resources? Check out our Newborn Screening Education and Training Resource Center.

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About Newborn Screening in Kentucky

Program Overview:

Kentucky's Newborn Screening Program helps parents find out if a baby has certain health problems which may not have obvious symptoms at birth. A healthy-looking newborn can have any number of serious conditions that cannot be detected without specific screening. If left undetected and untreated, these conditions can lead to slow growth, blindness, brain damage or even death. Early intervention and treatment can help prevent these serious problems and if treatment begins early enough, the newborn has an increased chance at living a full, healthy life.

For parents, it is important to make sure your infant has a blood specimen drawn before he or she leaves the hospital. If your infant was born at home, make sure your midwife, physician or health department conducts the screenings. It is very important to make sure your doctor has accurate contact information including your current phone number and address so laboratory results can be communicated as quickly as possible. Since many conditions can cause damage within days of birth, getting your child timely treatment will drastically improve your child’s chances of living a life with fewer complications.

An abnormal test means your baby may have one of the health problems tested for in this screening. A negative test means that your baby probably does not have any of these problems. Because this test is a screening and not a diagnostic test, there is a small chance of a false negative or false positive result. Your baby's doctor may want to repeat the test or do other testing to further verify screening results. Act quickly if your doctor contacts you about repeat tests or the need for a medical evaluation.

If your child's newborn screen is confirmed as positive, your doctor will talk with you about the next steps to take. You may be referred to a specialist for more testing and genetic counseling. If your baby is then diagnosed with a condition, treatment will begin to prevent or minimize health repercussions.

Rarely, the Newborn Screening Program does not receive notification of your baby's repeated results. This usually happens when a baby has a different primary care physician than the one who did the initial screening at the hospital. In this case, parents will receive a letter from the Newborn Screening Program letting them know their baby needs the repeat newborn screening test. If you get a letter asking you to repeat your baby's newborn screening test, first, contact your baby's primary care physician. The repeat screening test is performed at no charge by the baby's current primary care physician or local health department. When you go for the repeat screening, be sure to take the letter from the Newborn Screening Program with you and give it to the physician. This way the physician will know what is needed and how to send the results in to the state.

How is Newborn Screening Paid for in ­­Kentucky?

The NBS Fee is $150 for the initial newborn screen. The cost is the responsibility of the child’s responsible party. Kentucky law mandates health insurance coverage of every newborn if the mother is under their coverage at the time of birth. In most cases the newborn screening fee is part of the newborn stay in the hospital and not billed separately. Please note that insurance companies that are headquartered outside of Kentucky or those who are self-insured are not bound by Kentucky Insurance Law. The state does not charge the individual but rather the healthcare provider who submits the specimen. There is no charge for a screen that has to be repeated. The state does not cover the test if the patient does not have insurance.  The test is “self-pay” in those cases and families should contact their healthcare provider to determine the fee.

About Newborn Hearing Screening in ­­Kentucky:

The hospital will test your baby’s hearing and give you the results before you leave. The hearing screening is simple and does not hurt. It is important to have your baby’s hearing screened because if a hearing loss is present, it is important to find out early and get care to help with learning and language. If your baby fails the newborn hearing screen, it means that your baby needs further hearing testing. These tests will give you more information about your baby’s hearing. Follow-up testing is very important. If your baby has a hearing loss, you will want to find out early. Early identification is critical to language development, academic achievement, and social/emotional development for children with hearing loss.

Some babies may need further hearing testing even if they passed a hearing screen at birth. It is important to talk to your child’s doctor about your child’s medical history to determine if a risk factor for hearing loss is present. An appointment for further testing should be scheduled if a risk factor for hearing loss is present.

There are many resources for follow-up testing for your child. If your child failed the hearing screen or has a risk factor, you and your child’s primary care provider will receive a letter from the Kentucky Early Hearing Detection and Intervention (EHDI) Program that will include follow-up recommendations for your child. A list of clinics to contact for further testing will be included with this letter. The list of Infant Audiological Assessment and Diagnostic Centers can also be accessed by calling the EHDI Program at 1-877-757-4327 or visiting the EHDI website. 

Hearing screening and diagnostic testing are services that will be billed to insurance through the providing hospital or testing center. If your child is not born at the hospital, a hearing screen can be scheduled with one of the Infant Audiological Assessment and Diagnostic Centers. Hearing testing services can be obtained at the Office for Children with Special Health Care Needs (OCSHCN) at no charge to Kentucky residents referred through the EHDI program.


Policies and Resources

Opt-Out:

All newborns must participate in the newborn screening program unless the parent or guardian objects on religious grounds. This objection must be in writing. Kentucky newborn screening statutes or regulations contain no other specific provisions with respect to confidentiality and privacy regarding newborn screening information and samples, consent or the right to refuse screening, or the use of samples.

Support for families:

One of the concerns of families who find out that their child has a condition detected by newborn screening is the increased cost of health care. Fortunately, Kentucky has both programs and regulations which both help families obtain affordable care and treatment for their children with a metabolic condition.

If the newborn is covered by a private health insurance policy, Kentucky requires various types of policies to cover certain treatments related to the metabolic conditions detected during newborn screening. A health benefit plan that provides coverage for a newly born child must include the necessary care and treatment of medically diagnosed inherited metabolic diseases. A health benefit plan that provides prescription drug coverage must provide that coverage for amino acid modified preparations and low-protein modified food products prescribed and administered under the direction of a physician for the treatment of inherited metabolic diseases. Coverage under this subsection may be subject, for each plan year, to a cap of $25,000 for medical formulas and a separate cap for each plan year of $4,000 on low protein modified foods, subject to annual inflation adjustments. Contact your health insurance provider for further information.

If the newborn’s family receives their health care through Medicaid, the program will cover products for the treatment of inborn errors of metabolism or genetic conditions, consisting of therapeutic food, formulas, supplements, or low-protein modified food products that are medically indicated for therapeutic treatment and are administered under the direction of a physician. Also, The Office for Children with Special Health Care Needs may be able to help. Eligible clients must be residents of Kentucky, be younger than 21 years old, and have a condition that is covered. In order to apply for services call (800) 232-1160 or e-mail your request and write which county you live in. Then a OCSHCN staff person will contact you. The commission provides services through a variety of specialty clinics held across the Commonwealth. These specialty clinics include: cerebral palsy, craniofacial, ear, hand, hemophilia- pediatric and adult, scoliosis, spina bifida, cystic fibrosis, heart and more.

The Office for Children with Special Health Care Needs (OCSHCN) may be able to help. Eligible clients must be residents of Kentucky, be younger than 21 years old, and have a condition that is covered. In order to apply for services call (800) 232-1160 or e-mail your request and write which county you live in. Then a OCSHCN staff person will contact you. The Office for Children with Special Health Care Needs provides services through a variety of specialty clinics held across the Commonwealth. These specialty clinics include: cerebral palsy, craniofacial, ear, hand, hemophilia- pediatric and adult, scoliosis, spina bifida, cystic fibrosis, heart and more.

The Office for Children with Special Health Care Needs can provide the following types of services for children with physical special needs: on-site clinic visits at OCSHCN offices in 11 locations and at satellite clinics in physician offices and other settings as well as some medications. To determine if your child is eligible, please contact the state.

Storage and Use of Dried Blood Spots:

All specimens showing normal results are stored under cold conditions for 2 months and then destroyed via autoclave. All specimens showing abnormal results are stored under cold conditions and are used for QA and validation studies on new and current methodologies.  Specimens are not released for research purposes.

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

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