The AHCA is not who we are

The AHCA is not who we are

Jillian Daugherty and Ryan Mavriplis

When Jillian was in high school, I attended her IEP meetings as an enforcer. Kerry my wife knew the law. Our good friend Ellen Mavriplis – Jillian’s future mother-in-law – knew the law entirely. Her business, Inclusion Advocates, is based on upholding it.

I was there to bang my fist on the table.

Every time we sat across the big conference table from the school people who fought us, I wanted to produce a picture of Jillian, slam it on the table and say, “Do you know who we are talking about here? Jillian is not a line-item. She is a child.

“Jillian is not a theory, a philosophy or a test case. She is a student. Further, she is a willing student, an enthusiastic learner and someone who wants only to please. How many ‘typical’ students of yours fit that description?’’

That’s how I feel today, the day after House Republicans passed the American Health Care Act. It’s a small, mean bill. No wonder the president loves it. Here’s what it would do “for’’ Jillian:

Slash Medicaid by $880 billion-with-a-B over the next decade. Here’s the NYTimes on those ramifications:

As a result, 14 million fewer people would have access to health care by 2026, according to a C.B.O. analysis of the earlier bill, which contained similar Medicaid provisions. The cuts would also hurt special education programs, which receive about $4 billion from Medicaid every year.

Backers of the law say folks with pre-existing conditions would still be eligible for health coverage. “High-risk pools’’ would assure that. But the bill would leave it up to states as to how much money would be in those pools. From a Washington Post editorial:

The Brookings Institution’s Matthew Fiedler warns that once these states got federal waivers allowing insurance companies to hike premiums on sick people, many of those with preexisting conditions would be priced out of any comprehensive individual insurance market plan, whether or not they kept coverage continuously to that point. There would be few requirements on states to offer a real backstop — no mandates on who or what a high-risk pool must cover, or even that a high-risk pool be created.

In other words, those in the “high-risk’’ category could be charged prohibitively high rates. Combine that with the decimation of Medicaid and some people would be priced out.

Such as my daughter.

On top of that, the bill would eliminate Planned Parenthood for a year. They expect you to raise a child with a physical or intellectual disability, possibly without the benefit of health insurance.

This sort of legislative meanness is second nature to a president who made fun of a reporter with a physical disability, and who nominated for Secretary of Education a woman who didn’t know what IDEA was.

Nor should it come as a surprise that Republicans voted overwhelmingly in favor. Consider this gem of a quote, from Alabama Rep. Mo Brooks, who said this week that “people who lead good lives” don’t have pre-existing conditions.

Republicans believe people should be punished for having a genetic condition. It’s Jillian’s fault, in other words.

She was 5 weeks old when she spent 11 days in intensive care with the bronchiolitis that almost killed her. The bill for her stay came to low-six figures. Our insurance paid most of it. We were grateful.

Jillian has proceeded to become a tax-paying, contributing member of society, who has never required public assistance of any sort. She and her husband Ryan live entirely independently in a townhouse for which they pay the entire rent. Thank goodness we had insurance protection and a federal law mandating a free and appropriate education. We were lucky back then. Now?

We Americans like to see ourselves as good and generous, empathetic and caring. We are a beacon for the rest of the world. Until we aren’t.

We can only hope that the collective conscience of the Senate rises up and shreds the AHCA. Write your elected officials. Express your concern. Not only for your kids. For everybody’s kids. And for the future of America, the would-be beacon. We’re better than this.

We’re only as good as the way we treat each other.

Who are we now?

I’m beginning not to recognize us.

Thanks for reading. As always, Expect, Don’t Accept.



8 thoughts on “The AHCA is not who we are

  1. Paul, coming from a family with more pre-existing conditions than you could shake a stick at, thanks for writing this. Cheers, Nancy

  2. This is incredibly worded. Nails how I feel on the head. Thanks for sharing your truth and your experience.

  3. We have wonderful success stories to tell about our children bridging into community life thanks to HCDDs agencies and support services. Thank for sharing your story about Jillian and for speaking up, Paul.

    God bless you & your amazing family,
    Elisabeth’s Mom

  4. Thank you Mr Daugherty. I have read you since I was in high school. You have been a consistent, moral voice. You contribute reason and compassion which far exceeds much of the cacophony out there.

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