Medicaid holes: Topeka family lives amid insurance crisis

Mari White wasn’t looking for a handout when she came to the Statehouse on Wednesday to join thousands of others in calling for Medicaid expansion.

White was looking for a life raft as her family’s finances and psyche sink in a sea of medical costs.

Topeka was introduced to White’s 10-year-old son Alex last week, when one of his schoolmates at Shawnee Heights Elementary School started a fundraising drive to replace Alex’s beloved service dog, Hope. Hope was struck and killed by a car after spending the past year and a half at Alex’s side, helping him live normally despite a progressive neurological condition.

But White revealed Wednesday that Hope’s death was just the latest blow to her family.

White’s husband has the same condition as Alex, Hereditary Spastic Paraplegia. His legs are weakening, his balance is becoming shakier, and other frightening symptoms are beginning to appear.

“It’s also affecting his vision, slowly,” White said. “His optic nerve is dying.”

At 51, White’s husband recently lost his job as an ultrasound technician, and with it went the family’s health insurance. White herself has a chronic ailment that requires regular treatments to prevent iron build-up that could damage her liver and heart. Her 21-year-old son, who has autism, also is without health insurance.

Alex qualified for Medicaid days ago because he is a minor, but it won’t pay to replace his service dog. Meanwhile, White’s quest to restore medical coverage to the rest of her family has been beset with one roadblock after another.

White says her family receives no food stamps, no cash assistance and no disability benefits — no public assistance whatsoever except for Alex’s new KanCare Medicaid coverage and his free lunch at school. Public medical coverage is all she is seeking, and it remains beyond her grasp.

White is a registered nurse, working part time as she finishes her master’s degree. She says she was told her $ 500 a month salary is too high for the family to qualify for Medicaid in Kansas, which has one of the nation’s most restrictive income thresholds.

She says she was told her family should spend down its reserves, including her husband’s retirement fund and Alex’s college fund, which currently holds $ 6,000. She says she was told she should be looking for 20 master’s-level jobs a week. She says she was told her husband should try to go on disability, but she isn’t certain he would qualify and besides, he wants to work.

“They also asked me to get rid of one of our cars,” White said. “At one point it was suggested that I get pregnant. I am 52-years-old, and that is not going to happen. What is wrong with the system where a person who is educated and wants to work is penalized because he was unlucky enough to be born with a disability?”

The Whites are trying to avoid going broke while managing their medical conditions and paying for their older son’s college and Mari’s continuing education.

“We’re not that far from losing our house,” Mari White said.

White also is trying to hold her family together emotionally. Her husband, who grew up on a farm and values a hard day’s work, is sinking into depression. And she said Alex still has moments of guilt, blaming himself for Hope’s death despite a trainer assuring the family that even the most well-behaved service dogs sometimes bolt into the street.

“She just had a ‘dog moment,’ ” said White, who held Hope as she died.

So White came to the Capitol on Wednesday and spoke at an event hosted by the Kansas Medicaid Access Coalition, a group urging legislators and Gov. Sam Brownback to accept a plan to expand Medicaid as part of the federal health care reforms signed by President Barack Obama in 2010. The plan would extend coverage to those who make 138 percent of the federal poverty level — thousands of Kansas families, including White’s.

She said she has drawn inspiration lately from the outpouring of support for Alex and Hope — support that began with Saige Halseth, who rides the bus with Alex, and her parents contacting the media about the “Always Have Hope” bracelets they are selling for $ 2 and the fund set up at Alliance Bank.

“It’s really making my son feel better,” White said, “to see the support coming in.”

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