My kid has spina bifida. The AHCA is a nightmare bill for kids like her, and pro-lifers should be calling their Senators in droves.

I decided, in light of the AHCA, to research the average cost of health care for people with spina bifida. They call them “million dollar babies” for a reason. The first year, according to an article I found on PubMed, is $41,000. Every year after that is around $14,000. (The first year is the most expensive, usually, because of neurosurgery and NICU stays. I’d bet we racked up more than $41,000 in our first month of life.)
In Arkansas, we had private insurance, as well as Medicaid TEFRA, for which we paid an income-based premium and which we qualified for on the basis of Claire’s disability. It covered 100% of what our insurance didn’t. And there’s a lot that insurance doesn’t cover, but that is necessary to help kids with SB be as independent as possible, like therapies and developmental preschool. In Colorado, a supposedly more progressive state, we still have private insurance, but no Medicaid. We end up paying more out of pocket for our daughter’s care, even though we are privileged to have excellent insurance because my husband works for the university hospital.
I remember when I testified before a committee about Arkansas’ proposed 20 week abortion ban. I talked about how 20 weeks is right around the time that people usually get a fetal diagnosis that changes their very wanted pregnancy into a nightmare. One thing that people are wondering when they get that diagnosis is, can we afford to provide this child with the care she will need for the rest of her life? Will this bankrupt us? It’s a very real consideration. And I have read that 60% of people who receive a fetal diagnosis of spina bifida choose termination.
I’m pro-choice. I support safe, legal abortion care for any reason. However, I also truly believe that there are ways we can help people keep these WANTED pregnancies instead of terminating. And one of those ways is helping them afford the care their disabled kids will need for their entire lives.
The AHCA comes from the supposedly pro-life party. And yet this is a deadly bill for people with disabilities, many of whom depend on Medicaid for their life-sustaining care. This bill will make the answer to “Can we provide this child with the care she will need?” a “no.” I am confident it won’t help, and will in fact increase, that 60% termination statistic.
It also creates new worries for us as parents of a kid with spina bifida. Will she stand to have her coverage capped at some point? Will our insurer say, welp, you’re at the limit, we won’t pay any more for you, and kick her off? Will she be able to get a new policy with her pre-existing disability? Will she be able to work as an adult, or will she have to stay unemployed, lest she get too “rich” for her meager benefits? Will my husband have to stay in his job forever to ensure we keep the insurance we have now, because she might not be covered if we have to switch providers?
If you haven’t already called your senators about the AHCA, please do so. It’s a needless “screw you” to Obama that will cause pretty much everyone to pay more for less coverage, and will literally lead to people dying and pregnancies being terminated. Repealing the ACA and replacing it with this cruel bill helps no one but rich folks who will be getting a tax cut. Please call your Senators and oppose this bill. Today.
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I’m with her. And her too.

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You guys know I’m a yellow dog who’s all amped up for Hillary. I’ve been working really hard for her. But I’ve never really said why.

Honestly, when asked why I’m With Her, I usually want to say “EVERYTHING.” My politics are driven by my most deeply-held values: wholeness, unity, justice, equality, peace. In a world where people seem proud not to identify with either party, I can’t really pretend that I don’t agree with one on basically every issue. I care about women’s rights, LGBTQ rights, the environment, the poor, immigrants, education, and energy. I love Jesus, and I’m pro-choice.

But just like Claire’s diagnosis has changed our lives in many ways, it has changed my politics. My feminism has become bound up with disability rights. I want her to have every opportunity in life. I want her to always be treated with dignity. I want her to live in a world where she is valued as a whole person, where she will never worry about access to employment or healthcare, where she can dream big dreams and achieve them. And there’s only one candidate that can show my girls their dreams can include the presidency and who will fight for Claire’s rights and healthcare. It’s the candidate who has been fighting for children, people with disabilities, and everyone’s access to healthcare for her entire career.

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One candidate has literally mocked people with disabilities. One candidate kicked a kid with cerebral palsy out of his rally: “Protesters get kicked out; it’s actually a mother and her children, one of whom who has cerebral palsy and worries what a Trump presidency would mean for people with disabilities. Supporters kick at the family, including the boy’s wheelchair, as Secret Service tries to escort them out.” His mockery of people with disabilities encourages his supporters to assault a person with disabilities and his family. His presidency threatens the very dignity and safety of people with disabilities, not just because he has promised to take away the healthcare reforms that have helped so many, including our family, but because he fails to set an even basic human kindness example for how we should treat people with disabilities. It shouldn’t shock anyone that he has zero policy proposals to help people with disabilities since he has so few policy proposals in general. (The man claims he will make America great “again” but seems to have very few concrete plans to make that happen.)

Hillary, in contrast, devoted an entire speech to policy proposals that would help people with disabilities. She proposes ending policies that allow people with disabilities to be paid less than minimum wage. She wants Congress to ratify the UN Convention on the Rights of Persons with Disabilities. She wants to improve access to employment and education for people with disabilities. And she wants to continue to improve access to healthcare for people with disabilities.

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Photo credit: Whitney Loibner

When I saw Bill Clinton speak at a rally on Friday, he talked about meeting a young Hillary supporter from Florida. He told Bill that he was a fan of Hillary’s because he had a feeling she “wouldn’t make fun of” him. Bill told him he was very smart. “That’s what they say, but I have a hard time getting through the day,” the boy said. Bill told him his feelings were correct, that Hillary has been fighting for kids like him for her entire career (like when she helped found the still-operational organization Arkansas Advocates for Children and Families), and that while in the Senate she had work
ed on legislation to help people with Autism.

I always knew I’d be voting for my first female president for my daughters. I didn’t always know I’d have a daughter whose spina bifida would turn me into a disability rights advocate. But because of her, I have one more reason to be proud to stand with Her.

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I’ll be at the campaign office today and tomorrow. If you have any time to spare at all, please do what you can to help out. You can even phone bank from home to make sure people know where their polling place is and have a plan to get there and vote. We need all the help we can get! And above all: get out and vote! Even if the line is long. It matters so much.