Child Watch Column

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By Marian Wright Edelman

Founder and President Emerita

Bill La Croix began singing to his daughter Anna as soon as she was born. Picking his banjo, he sang to his little blue-eyed girl about the mountains outside their Victor, Montana, home. But Anna didn’t hear her father’s music. When she was about 14 months old, Bill and Anna’s mother, Amy, discovered their child was deaf. Doctors explained that the girl’s inner-ear structure, known as the cochlea, was malformed, and unless they took action, Anna would remain permanently deaf. What the couple didn’t know is that they would have to fight an insurance company to restore her hearing.

Bill and Amy quickly found out that taking action would be expensive. Their doctor in Missoula prescribed $2,000 hearing aids, which they had to pay for out-of-pocket because their private insurance plan wouldn’t cover them. The family’s stripped-down policy cost them $7,000 a year in premiums, plus a $6,000 deductible. Paying for the hearing aids wasn’t easy. Amy operates a vacation rental home business and Bill is an organizer for the Montana Human Rights Network, while also working as a musician. Their combined income is about $40,000—so one-third of it goes just to pay for insurance premiums and deductibles.

As it turns out, the $2,000 hearing aids could never have worked anyway because they only amplify sound—sound that Anna couldn’t hear. The Missoula doctor later admitted he didn’t expect the hearing aids to work but prescribed them as part of the “protocol.” For Anna to acquire any level of hearing she required at least one cochlear implant operation, and for her best chance at normal hearing she needed an operation for each ear. The implants are marvels of medical technology that convert external sound to digital signals that are sent to electrodes inserted in the inner ear, stimulating the brain to experience closely approximated sounds.

The cochlear implant operations would cost $160,000, and surgeons in Missoula wouldn’t schedule them until Anna’s parents could demonstrate that the cost would be covered by insurance. But their insurance company twice denied the family’s claim to cover the implants, determining that cochlear implants are hearing aids; hearing aids aren’t covered under the plan. The claim was denied even after a surgeon certified in a letter to the insurer that the operations were “medically necessary.” Anna’s parents then filed a grievance with the company through the State Insurance Commissioner. But time was running out. Anna was then 20 months old and needed the operations before she was three to avoid remaining deaf permanently.

Continuing to fight, the couple found that Seattle Children’s Hospital could perform the operations at a lower cost. So they made plans to go to Seattle, even though they had not secured a commitment from their insurance company. That commitment finally came the day before they left for Seattle. Anna received her first operation in August 2007 and her second in August 2008.

At three, Anna is a bright, active, happy child and a quick learner who expresses herself through sign language and drawing, and now she’s learning to talk. One magical day, she even signed to her parents that she could hear a bird singing.

But Amy’s and Bill’s struggles are not over. If Anna is to have a real chance to hear normally and make music of her own, she will need years of monitoring and therapy. She must travel often to Seattle for therapy with two specialists who are helping her learn to speak and checking and adjusting her implants. On top of the tremendous costs of travel and home therapy, Bill and Amy still must haggle constantly with the insurance company to recover any of Anna’s health care costs.

Unfortunately, they have no other viable alternatives. Even the Montana Children’s Health Insurance Program (CHIP) is not an option. With the CHIP income eligibility limit at $38,555 for a family of four (175 percent of the federal poverty level), the family’s $40,000 income puts them just above the limit. And even though Montana is raising the limit to 250 percent of the poverty level, Anna would first have to go without any coverage for three months—Montana’s mandatory waiting period. Bill and Amy simply can’t risk three months without coverage since Anna requires continual medical care. Moreover, a modest increase in Bill and Amy’s income could still result in an immediate loss of CHIP coverage, and since Anna would then have a “pre-existing condition,” the chance of their regaining private coverage would be remote.

The question is: Why, in the richest country on earth, should parents like Bill and Amy have to wage a major, constant struggle with an insurer to provide their child with the medical care she so obviously needs? This is the moment for real health care reform for all children in America. The system can and must be made over so that every child has access to affordable, comprehensive coverage. No parent should live with the day-to-day struggles experienced by Amy and Bill just to get health care for their child.

2018-05-21T15:08:57-05:00May 22nd, 2009|