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Monday, June 26, 2017

Voices of Care: Tara in California

Cate Bonacini

Director of Storytelling Initiatives

This blog is part of an ongoing series of stories from people across the country who would be negatively affected by efforts in the states or in Congress to restrict who can get health care through Medicaid or funding for the program.

Medicaid often provides life-saving care for children who are born with congenital defects. This California family credits Medi-Cal, California’s version of Medicaid, with saving their son in the days after his birth. If Medicaid is cut, services like these will no longer be available for families like theirs. 

Tara’s young son would not be alive if it weren’t for Medi-Cal. 

She was laid off from her job just prior to his birth and there was an issue with transitioning to COBRA, her husband is self-employed without insurance, so when Benjamin came, he was uninsured. Tara says, “We were hard-working Americans, but that didn’t matter when it came to insurance. Benjamin was uninsurable because of his heart.” 

When Benjamin was two weeks old, he was taken to the emergency room, where they learned he had a congenital heart defect that was causing him to go into heart failure. As doctors rushed to save his life, Tara and her husband panicked, not knowing how they would afford any care. Tara’s mom and sisters offered to sell their houses, and their extended family looked to liquidate whatever assets they could. At that point, someone at the hospital gave Tara the paperwork for California Children's Services. They found they were eligible, and Benjamin’s coverage began shortly thereafter.

For years, Tara and her family watched their income levels closely, keeping their income low, fearing that Medi-Cal would be terminated. She did not return to work for years. She emphasizes that they never collected any other kind of assistance, but she was left with no choice, knowing that they would never be able to find other coverage for Benjamin. 

Her mother, who is retired, takes care of Benjamin while Tara is at work, driving him to doctors’ appointments and helping out. Ben will always have heart issues, the condition cannot be cured, only maintained. Last year, he needed his second open-heart surgery, and unfortunately, it won't be his last. 

Once Tara began to work, her husband was diagnosed with auto-immune hepatitis. He now joins the millions of Americans who have pre-existing conditions. “If the ACA is repealed and I lose my job, and insurance, my husband and son will lose access to health insurance we can afford. No health care saving account will cover the cost of their care, not on a teacher's salary. Benjamin will soon be an adult, and unable to be covered on my health insurance. I pray he will be able to afford health insurance as an adult.” 

Tara says she wants lawmakers to know, “We never collected any other type of assistance, but we had no choice to accept the health coverage. Please consider the effects of repealing this act on children like my son and our family. We are real people. We’re not special. We’re normal Americans. We work hard, with extraordinary circumstances. We don’t want a free ride, we just want help and for lawmakers to know we’re not disposable.”