Less than 1% of newborns in MO are diagnosed with a genetic disorder.
For children, parental income is the sole determinant for Medicaid eligibility.
Children with a genetic disorder may be eligible for other state assistance, depending on their disorder.
A genetic disorder is a health condition caused by abnormalities in one or more genes (Centers for Disease Control and Prevention (CDC) 2024a). Genetic disorders can be present at birth or develop due to changes in genes, influenced by environmental factors such as air pollution or lifestyle choices like smoking and alcohol consumption. Newborn screening (NBS) can identify genetic disorders in infants before symptoms appear (Ding & Han 2022).
Newborn screening (NBS) is a nationwide public health program that identifies serious but treatable conditions within 48 hours of birth (CDC 2024b). NBS tests for:
Many of these conditions have no symptoms at birth. Early detection can lead to timely treatment and effective management.
The MO Department of Health and Senior Services (DHSS) administers NBS for over 70 disorders (DHSS 2024). From 2017 to 2021, approximately 0.25%, or 226 of all newborns screened in MO were diagnosed with a genetic disorder yearly (MO Newborn Blood Spot Screening Dashboard, MO Newborn Screening Annual Report 2017, Figure 1).
Figure 1. Number of newborns in MO diagnosed with a genetic disorder annually (2017–2021). Adapted from MO Newborn Screening Annual Report 2017 and MO Newborn Blood Spot Screening Dashboard.
A genetic disorder does not automatically qualify children for MO HealthNet (MO Medicaid) (MO DSS 2024, DHSS n.d.). Eligibility for MO HealthNet is determined solely based on parental income.
If NBS identifies a genetic disorder, DHSS ensures that the child is established with a primary care provider and a specialist to confirm the diagnosis. Additionally, DHSS educates families about available medical coverage options and any state programs the child may be eligible for (Personal communication, Kiesling 2025).
The Metabolic Formula Program, administered by DHSS, provides specialized infant formulas for children diagnosed with inherited metabolic disorders that affect the body’s ability to process food, produce energy, or eliminate waste (Ferreira & Karnebeek 2019, DHSS n.d.). State assistance is available only after applicants have exhausted all third-party benefits (e.g., insurance, Medicare, and Medicaid). For more details, see the Science Note Coverage of Phenylketonuria (PKU) Dietary Products.
The MO Children with Developmental Disabilities (MOCDD) waiver is a Home and Community-Based Services (HCBS) Medicaid waiver program under the Department of Mental Health (DMH) (MO DSS n.d.). A MOCDD waiver grants Medicaid eligibility to children under 18 years of age who would qualify for Medicaid if institutionalized but whose families prefer home care (MO DSS 2023, MO DMH 2021). Some genetic disorders like spinal muscular atrophy, can lead to developmental disabilities and may qualify for the MOCDD waiver (National Institutes of Health 2012).
The State Title V Maternal and Child Health (MCH) Services Block Grant Program is a Federal-State partnership that helps states meet the health services of pregnant people, infants, and children, including children with special health care needs (Health Resources & Services Administration 2023).
Children with genetic disorders who have special health care needs and are under 22 years of age can qualify for primary, preventative, or specialty clinical services. They are also eligible for non-clinical services that increase access to health care, such as transportation, case management, and care coordination (MCH Services Block Grant MO Annual Report 2024).
Ding S, Han L (2022) Newborn screening for genetic disorders: Current status and prospects for the future. Pediatric Investigation. 6(4):291-298. https://pmc.ncbi.nlm.nih.gov/articles/PMC9789938/
Ferreira CR, van Karnebeek CDM (2019) Inborn errors of metabolism. Handbook of Clinical Neurology,162:449-481. https://pmc.ncbi.nlm.nih.gov/articles/PMC11755387/
Health Resources & Services Administration (HRSA) (2023) Explore the Title V Federal-State Partnership. FY 2023 Expenditures. https://mchb.tvisdata.hrsa.gov/
Kiesling, J (2025) Chief, Bureau of Genetics and Healthy Childhood, Missouri Department of Health and Senior Services. Personal communication.
Maternal and Child Health Services Title V Block Grant Missouri (2024) FY 2025 Application/ FY 2023 Annual Report. https://mchb.tvisdata.hrsa.gov/Admin/FileUpload/DownloadStateUploadedPdf?filetype=PrintVersion&state=MO&year=2025
Missouri Department of Health and Senior Services (DHSS) (2024) Newborn Screening. https://health.mo.gov/living/families/genetics/newbornscreening/pdf/NewbornScreeningBooklet.pdf
Missouri Department of Health and Senior Services (DHSS) (2017) Missouri Newborn Screening. 2017 Annual Report. https://health.mo.gov/living/families/genetics/newbornscreening/pdf/2017-newborn-screening-report.pdf
Missouri Department of Health and Senior Services (DHSS) (n.d.) Metabolic Formula Program. Bureau of Genetics and Healthy Childhood https://health.mo.gov/living/families/genetics/pdf/MetabolicFormulaFacts.pdf
Missouri Department of Health and Senior Services (DHSS) (n.d.) Missouri Newborn Blood Spot Screening Dashboard. Blood Spot Screening Dashboard. https://health.mo.gov/living/families/genetics/newbornscreening/blood-spot-screening.php
Missouri Department of Mental Health (DMH) (2021) Missouri Children’s with Developmental Disabilities (MOCDD) Waiver. https://dmh.mo.gov/media/pdf/mocdd-waiver-eligibility-requirements
Missouri Department of Social Services (DSS) (n.d.) Missouri Waiver Programs. https://mydss.mo.gov/mhd/waiver-programs
Missouri Department of Social Services (DSS) (2024) Eligibility Requirements for MO HealthNet Coverage. https://mydss.mo.gov/media/pdf/eligibility-requirements-mo-healthnet-coverage
Missouri Department of Social Services (DSS) (2023) Missouri Children with Developmental Disabilities Waiver. https://mydss.mo.gov/mhd/waiver/children-with-dd
National Institutes of Health (2012) National Human Genome Research Institute. https://www.genome.gov/Genetic-Disorders/Spinal-Muscular-Atrophy
United States Centers for Disease Control and Prevention (CDC) (2024a) Genetic Disorders. https://www.cdc.gov/genomics-and-health/about/genetic-disorders.html
United States Centers for Disease Control and Prevention (CDC) (2024b) Newborn Screening. About Newborn Screening https://www.cdc.gov/newborn-screening/about/index.html
