My son Lucas was born with Hypoplasitc Left Heart Syndrome(HLHS) in January of 2001. He has been in and out of hospitals all of his life. Like many children faced with life-threatening health problems he is on state medicaid. He is uninsurable by private insurance companies and to be allowed to remain on the state medicaid we as a family must make below $40,000 a year. Of course, we are grateful for the wonderful healthcare he has access to here in Oklahoma, but we are barely able to pay our bills. Most months a bill has to be put aside and paid late. Groceries are a luxury sometimes. I know we are not alone in this struggle. We know many families with children more ill than Lucas, who have had to quit good jobs in order to stay with-in the income bracket required by medicaid. Families like us have to choose to stay only slightly above the national poverty level, because if they make the income they are capable of making, they will then lose medicaid and be completely responsible for their child's enormous medical costs. For expample, if I went to work, even making minimum wage, we would lose medicaid and that minimum wage would have to cover the $24,000 a month for just one of my son's medications. I would like to see a law enacted by the state, which would assist families in our situation to help make a better future for their children. In this new law, children with conditions like Lucas, which qualify for SSI, would be guaranteed state medicaid benefits regardless of their parent's income. The parents would be responsible for a premium paid to the state based on their income. The higher your income, the higher the premium. This would help offset the additional burden put on the state medicaid system. Most families are more than willing to help cover their children's medical bills if given the chance to earn the money they deserve.

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