Figuring out financial assistance and insurance was one of the most difficult things Gina faced after she was widowed with two young medically-complex sons. After months of back-and-forth, she was finally able to secure the life-sustaining equipment her children required and deserved.
The difficulty in the system inspired her to join an organization dedicated to helping families like ours navigate the medical-financial world. She recently retired after 31 years in the realm.
In this episode, Gina opens up about how difficult the financial battles were, and gives us tons of ideas and resources to give our children the care they deserve.
Links:
Medical Home Portal (can search resources in your state. We talked about this one a lot)
Parent Center Hub (to find your state’s version of the Utah Parent Center)
Family Voices(to find State and local resource centers)
Medicaid Waivers (to find Medicaid Waivers by state - search 1915 (c) in the filter)
Children with Special Health Care Needs program (also referred to as Title 5 in episode, and includes Technology Dependent Waiver mentioned in episode)
Rare disease financial assistance program (may help with medical needs including respite)
UnitedHealthcare Children’s Foundation (can receive grants for costs not covered by insurance up to $5000)
Social Security applications
Angel’s Hands Foundation (non-profit in Utah)
Ep. 24: Disability Advocacy w/ Jenny McLelland (great episode about affecting change in coverage policies)