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Why my daughter taught me about protecting my disabled son. By Lisa Carver for Babble.com.

Personal Essay: Taking His Side

What my seven-year-old daughter taught me about protecting my disabled son.

by Lisa Carver

July 30, 2009

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“To choose what gets cut, and what doesn’t, is very hard,” my friend the politician told me. “It previously was something that fed a politician’s God-like image of dispensing, but our country has changed to a survival environment. Divisions between Federal, State, County, City, and District have emerged and instead of a collective look at what can be done to help us all, it’s become a look-out-for-yourself atmosphere. The Federal Government steps in to gather up what they can. More control over things they really aren’t qualified to take on when they lack the oversight capacity. This economic catastrophe isn’t going the way I thought. I thought we, as citizens, would be getting together, reverting to a more tribe-like atmosphere. I see the opposite happening.”

“We cannot fill your son’s compounded medicines any longer,” my friend the pharmacist told me, “because New Hampshire Medicaid won’t reimburse us for compounded medicines as of June 30th.”

“But he can only take medicines through his g-tube,” I said. “If he takes it by mouth, it will cause lung damage.”

“Your only alternative is to pay for the compounding.”

His medicines are thousands of dollars a month.

“Dear Parent/Gaurdian,” Office of Medicaid Business and Policy told me on July 1st, “your child will remain eligible for Home Care for Children with Severe Disabilities Medicaid only if the cost for providing home care is no greater than the cost of institutional care. This is a Federal law effective immediately.”

The federal government is now forcing us in the home to behave like institutions. His hours of home care services have already been cut in half. Now that he’s entered adolescence, his anxiety has skyrocketed, and so have his needs. Now I find out I have to find a way to cut these services even more, or else give him up to some institution?

He did not ask to be born this way. I didn’t ask to be in charge of someone with such difficulties. But he is, and I am, and the federal government is now forcing us in the home to behave like institutions: cut corners and fudge records in order to help the government not pay more, always at the expense of the recipient: the one who needs care. It’s not bed sores and amputated legs my son is in danger of. It’s suicide. Or a long life of getting not enough care or substandard care, of being used and ignored and abused and taken advantage of and fattening someone’s wallet. His sister can’t follow him around everywhere, protecting him, and the federal government doesn’t listen to her anyway.

And it’s not just my son: until there’s a better system of care, how many at-risk children will have dollar bills stolen from their rooms?

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