Managing Medically Complex Care

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Parents of Medically Complex Children

June 16, 2022 | Presented by Kathy Kraus and Mary Osborne

Handout: Ten Tips for Toughness

Resources for Medically Complex Care Management

States within the United States offer different programs to aid families with medically complex children.

Check to see if your state has a Health Insurance Premium Payment (HIPP) program. HIPP may pay all or part of the family’s group health insurance premium (monthly cost), co-payments, and/or deductibles. This program is for those eligible for Medicaid and who have employer-sponsored group health insurance available to them. Programs vary by state and not all states offer this program.

You may also want to see if your state has a Medicaid waiver to receive Medicaid, regardless of income. Check Medicaid’s State Waivers List for more information.

Kid-Friendly Resources

A Kid Again helps “families caring for a child with a life-threatening condition feel ‘normal’ again by helping them gain back moments of positive, family-shared experiences and memories.” The program helps families attend professional and collegiate sporting events, theme parks, zoos, mini-golf, arcades, and holiday parties.

Icing Smiles “provides custom celebration cakes and other treats to families impacted by the critical illness of a child.” The non-profit connects you with local bakers in your community and covers the cost of the cake.

Magical Moments Foundation is a wish-granting organization that provides children with facial differences magical adventures and experiences, such as meeting celebrity chefs, Grammy and CMA award-winning musicians, Hollywood artists, and Olympic and professional athletes.

Tubie Friends is a non-profit that provides stuffed animals with feeding and breathing tubes. Children can see an animal that has similar equipment to what they may receive surgically.