States Indiana

Opt-Out:

If you have religious objections to this testing, you may say “no” to the testing in writing and sign a form advising you that your hospital, doctor, and clinic staff are not responsible if your baby develops problems because those disorders were not identified and treated early.

Support for families:

One of the concerns some families have when they find out their child has a condition detected through newborn screening is the increased cost of health care. To help address this concern, Indiana has laws and programs that are designed to help families whose children have these rare conditions.

Indiana requires accident and sickness insurance policies and group health maintenance organizations to provide coverage for medically necessary foods, such as formula that is necessary to meet the dietary needs of those individuals with amino acid, organic acid or urea cycle metabolic conditions. As long as a physician prescribes the formula to treat those conditions, insurance plans must cover it just as they do other prescriptions under your plan. Therefore, there may be copayments or deductibles associated with the formulas. However, insurance companies are legally prohibited from treating these differently than any other prescription would be treated under your plan.

 In addition to the regulations for private insurers, the Children’s Special Healthcare Services (CSHCS) provides payment for medical services for children that financially qualify for the state funded program and also has an active Community Integrated Services program that collaborates with other state and local programs, families, youth and providers that support CYSHCN. For more information, please visit the CSHCS website at https://www.in.gov/health/cshcs/. 

Lastly, the state newborn screening program is a centralized program which provides follow-up, condition management, family counseling and support, and formula for those newborns with conditions identified through newborn screening. For more information, please visit the website at https://www.in.gov/health/gnbs/.

Storage and Use of Dried Blood Spots:

Once your child’s dried blood spots (DBS) have been screened for the conditions indicated in the newborn screening program, there remains some dried blood in the form of “residual dried blood spots” (also known as “waste blood specimens”).

There are several reasons why DBS are kept. First, good laboratory practices require that samples (such as dried blood spots) be kept for a period of time after testing is done, in case a test needs to be checked or repeated. DBS are also used by Indiana’s newborn screening laboratory to help develop new tests for newborn screening and to make sure that laboratory equipment is working correctly. Currently, Indiana’s newborn screening law allows leftover DBS to be stored for a maximum of three years for deidentified medical research after newborn screening is completed. Indiana Department of Health will not use a child’s DBS for medical research unless the child’s parent or guardian has agreed to allow it to be used. If a parent/guardian has agreed to store their child’s DBS to be used for medical research and changes their mind, they should complete the “Request for Destruction of DBS” state form located on the GNBS website under “State Forms”:  https://www.in.gov/health/gnbs/resources-and-state-forms/state-forms/. For more information about the storage of dried blood spots in Indiana, visit the Newborn Screening Basics webpage: https://www.in.gov/health/gnbs/information-for-families/screening-basics/

The IDOH GNBS program uses health information about you or your newborn for screening, to provide health care coordination services, to obtain payment for screening, for administrative purposes, and to evaluate the quality of care that you or your newborn receives. This information will not be sold to any organization or entity.

The GNBS Program may change its policies at any time subject to applicable laws and regulations. You may request a copy of our current policies or obtain more information about our privacy practices by contacting the IDOH Privacy Officer at 2 N. Meridian St., Indianapolis, IN 46204 or by viewing a list of all available HIPAA policies here: https://www.in.gov/health/about-the-agency/health-information-by-topic-a-z-/indiana-state-department-of-health-office-of-technology-and-compliance/what-is-hipaa/

The GNBS Program must have your written permission to use or give out personal or health information about you for any reason that is not described in this notice. You can revoke your authorization at any time, except if the GNBS Program has already received your permission and acted, by contacting the IDOH Privacy Officer at 2 N. Meridian St., Indianapolis, IN 46204.

If you believe that we have not protected your or your newborn’s privacy or have violated any of your or your newborn’s rights you may file a complaint by contacting the IDOH Privacy Officer, at 2 N. Meridian St., Indianapolis, IN 46204. Phone number (317)-233-7655

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