Programs
The Kansas Special Health Care Needs (SHCN) Program promotes the functional skills of persons who have or are at risk for a disability or chronic disease. SHCN provides specialized medical services to infants, children, and youth up to age 21 who have eligible medical conditions. SHCN can help provide hearing aids, earmolds, and batteries.
A variety of services are available for infants and toddlers with developmental delays or disabilities, ages birth through 36 months, and their families. Services are free of cost and available statewide.
Regional & National Associations by disorder/disorder group (e.g. CF Foundation, ALD Alliance, etc.) – (X-ALD) ALD Alliance – https://www.aldalliance.org/
(Cystic Fibrosis) CF Foundation – https://www.cff.org/
(Sickle Cell Disease) – Uriel E. Owens – https://www.sicklecellmidwest.org/
(Homocystinuria (HCY) – HCU Network America – https://hcunetworkamerica.org/
(PKU) – National PKU Alliance – https://www.npkua.org/
(Maple Syrup Urine Disease) – MSUD Family Support Group – https://msud-support.org/
(Congenital Adrenal Hyperplasia) – CAH Support Group – https://www.livingwithcah.com/
(Primary Congenital Hypothyroidism) – American Thyroid Association – https://www.thyroid.org/congenital-hypothyroidism/
(Pompe) – Association for Glycogen Storage Disease – https://www.agsdus.org/Type-II
Organic Acid Conditions – Organic Acidemia Association – https://oaanews.org/
(GALT) Classic Galactosemia – https://galactosemia.org/
(SCID) Severe Combined Immunodeficiency – https://primaryimmune.org/
(SMA) Spinal Muscular Atrophy – https://www.mda.org/
National Organization for Rare Diseases – https://rarediseases.org/
Guide to Kansas Family Supports – This pamphlet is a compilation of 20 different programs and organizations available to Kansas families. It includes a short description of each program, the website address, and a QR code for ease of access.
Having a newborn is a wonderful time that can also present many challenges for parents and families. Receiving a diagnosis and having a child with a special health care need can make this time especially challenging. Our programs work closely with others throughout the state to ensure that families and children identified through newborn screening and our birth defects surveillance program are connected to the resources and supports that they need. The following programs may be of benefit to you and your family. If you have additional resources not listed that would be helpful to others, please email:
Shane Morris, Education & Outreach Coordinator: