Sara Lou’s Health Care Story

TSara Lou | Neenah, WI

I lived in England for 10 years before coming back to Wisconsin. They have universal health care over there, so medical expenses weren’t a concern for us. My daughter, Chloe, is severely disabled, but she had testing there, she got therapy, and she was receiving the help she needed.

In 2006, we moved back to the US and Chloe didn’t qualify for therapy services outside of school anymore. She didn’t get speech therapy, she didn’t get occupational therapy. She didn’t qualify for anything.

Chloe is 15 now. She is still severely disabled, she’s non-verbal, she isn’t potty-trained. She can walk, which means that she can — and does — get into everything *laughs*. The only reason that we can afford to live in the US is because of the Katie Beckett Program, which helps provide Medicaid for kids who normally don’t qualify.

But if Republicans put Medicaid block grants in place, that’s all lost. I probably wouldn’t be able to work because I won’t be able to pay someone to look after Chloe. So I would likely have to quit my job to care for her. And then I would have no income. I don’t know how I would pay my rent or pay for anything.

Our backup plan was that if we started going bankrupt, like so many families do because of medical care, we would move back to England. But I shouldn’t have to leave my own country just to keep my family healthy.

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My story isn’t the only one like this, obviously. There are millions of other people out there in Wisconsin and in other states that are having the same issues. I work two jobs. My ex-husband works. It’s not like we aren’t contributing members of society. But I’ve had people say to me, “Well, it’s your daughter who’s disabled. Why should other people pay for that?”

So, because I don’t have enough money, my daughter should have to suffer? That’s my response.

It’s hard to know what Ron Johnson thinks about all this because he hides away. But I text and fax and email him a lot, and his responses are never personal. He doesn’t really care about us. It’s just a load of crap.

I don’t even know why he’s in public office. The whole role of being in public office is to represent your constituents. And this is something that I keep saying to him: I don’t care what your personal opinion is, you have to listen to your constituents whether you agree with them or not! Because if you are on one side and more than half of your constituents are on the other side, then you are there to represent yourself, not them.

He doesn’t respond.

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Right now, a lot of people are seeing what is going to happen to my people like daughter with serious medical needs, and they are saying, “This isn’t okay. We need to do something.” They are sticking their necks out for people. Everybody is standing up. Everyone is coming forward. All of the resistance groups, all the anger that people feel gives me a lot of hope, because I think that the majority of people are on our side.

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