Magazine article The Exceptional Parent

Success Stories

Magazine article The Exceptional Parent

Success Stories

Article excerpt

No matter how hard a family tries to provide appropriate health insurance coverage for a child with a disabilty, there are times when the system just doesn't seem to respond. Sometimes, the only options left are an attempt to change the rule (or their current interpretations), or to negotiate directly with government officials and/or insurance companies. Although both options require a great deal of time and energy, these actions can lead to successful problem resolution and may also establish a precedent, making it easier for others to solve similar problems in the future. In this month's column, I'm happy to share two stories of parents who bucked the system to resolve major health insurance problems.

Developing a Medicaid waiver

Earlier this year, a mother wrote to me about her family's situation: "When my son was 18 days old, I awoke to find him, in his cradle, not breathing and blue. He spent the next four days in intensive care. We left the hospital with a monitor and night nursing care. He was home for only one and a half days before he stopped breathing again. He was admitted to the hospital once more, where they did every test imaginable but were unable to find the cause of the problem.

"We didn't realize that the struggle to keep him alive would also mean a continual battle to get the things he needed. Our first inkling of the struggle that lay ahead came when our son's doctor ordered resuscitation equipment for our home, and the insurance company refused to cover it. Then the company terminated his night nursing coverage; my husband and I began taking turns doing 'awake shifts.' We applied for SSI and Medicaid, but they said we made too much money. In addition, neither program considered apnea, in itself, a coverable 'condition,' even though it was life-threatening.

"Following several hospitalizations, my son was released from the hospital with 30 days of approved night nursing care. He came home with a monitor, a suction machine, oxygen and resuscitation equipment and a positive airway pressure machine.

"After extensive negotiations, the insurance company agreed to cover nursing care on a month-to-month basis. So, every month, I wait for them to terminate coverage. I'm continually on the phone, and going to agencies trying to find some help... "

Since this family's private insurance program was self-funded, it was regulated under ERISA - the federal "Employee Retirement Income Security Act" of 1974 - not under state law. As a result, the state insurance department was unable to help. …

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