Faces of Medicaid: The Champe family story
- Published on Thursday, 09 May 2013 14:39
Medical Assistance, Minnesota's Medicaid program, provides essential care for a broad range of families in Minnesota and nearly half of the program's beneficiaries are children. "Faces of Medicaid" is a year-long series that will highlight stories from some of the patient families at Children's Hospitals and Clinics of Minnesota who have benefitted from this safety net program. Protecting Medicaid is a high priority for Children's. Read more about why Medicaid matters to Children's.
My daughter Ava Marie Anna was born weighing less than a pound of butter. She was 14.5 ounces and 12 inches in length. Ava was born fighting for her life and she continues to work hard every day to make her place in our world.
An early start
Ava was born via emergency caesarian section on November 12, 2006 – three months early – and immediately transferred to the NICU at Children’s. I credit Children’s with saving Ava’s life. I am sure she would not have survived at a hospital less equipped to handle micro-preemie babies. Our care team didn’t hide the fact that Ava would likely have health issues related to her unplanned early start in life. While that news was difficult to swallow at the time, I believe it was in our family’s best interest to learn the news early because we were able to seek support and specialists, and have realistic expectations.
Ava was diagnosed with Cerebral Palsy-spastic diplegia which affects her balance and coordination. While she is able to walk, she has undergone several major surgeries and countless therapeutic interventions through physical, occupational, and speech therapy. This year, she started school in a main-stream kindergarten class.
Getting the care Ava needs
Since Ava’s birth our family has had private health insurance through our employers. However, because of her premature birth and her complex medical condition, Medical Assistance (MA) has been essential in making sure Ava gets the care she needs. Ava received MA based on her low birth weight while she was living in the NICU. Upon diagnosis of Cerebral Palsy Ava qualified for MA-TEFRA.
The TEFRA program provides additional medical coverage for kids whose families would not otherwise qualify for MA. This program has been an incredible resource for Ava and our family, even with private health insurance coverage for Ava. The coverage includes a number of important services, like co-pays for frequent appointments (upwards of $60 per week), reimbursement for private health insurance premiums, the Consumer Support Grant and Personal Care Attendant coverage have prevented our family from going into debt. We still struggle financially, but we are able to keep our head above water and meet our financial obligations.
Preserving MA and supporting families
I believe it is critical to maintain funding for MA-TEFRA because families who have children with disabilities need this crucial support. Emotionally, it’s hard to see our child struggle with being able to do what her peers do. It’s hard to walk through surgeries and hospitalizations with her, including all the needle pokes, tests and x-rays. It’s hard to see her anxiety about being away from her classmates. But at least through MA-TEFRA, we are able to support Ava in the best way we know how; to hold her hand and be present. There are countless families all across our state of every ethnicity and income bracket that access this program. MA-TEFRA supports families as kids, one-by-one, receive the care they need and have the opportunity to be their best.