Why The AHCA Is So Devastating For Children With Disabilities

Photographed by Megan Madden.
Last Thursday, the House of Representatives narrowly approved the American Health Care Act (AHCA), effectively voting to take health insurance away from millions of Americans. As a single mother to three children, one of whom has Down syndrome, this piece of legislation would be catastrophic for my little family.
There are the immediate ramifications of this bill: I rely on the Affordable Care Act, aka Obamacare, for affordable health insurance. What’s less talked about in debating the new healthcare bill is the fact that the AHCA in its current form decimates Medicaid, which will not only provide health coverage for my daughter Johanna — Jo Jo — when she’s an adult but also the support she will need to live and work independently. Medicaid also covers some of the costs for special education services for her school system, something else which is now on the chopping block.
But what’s even more upsetting to me, the parent of a child with disabilities, than trying to take away health care from millions of Americans, including children like mine, is using your child with Down syndrome as a political pawn to justify it. That’s effectively what Cathy McMorris Rodgers (R-WA) did in a recent editorial in the Washington Post, when she claimed that one of the reasons she voted for the AHCA was to protect her eight-year old son, Cole, who has Down syndrome. “To me, protecting people with preexisting conditions isn’t just good policy — it’s a personal mission,” McMorris Rodgers wrote, leaving me to wonder whether or not she’d actually even read the bill she just championed.
(According to a spokeswoman, McMorris Rodgers did read the bill in full.)
She’s not alone, either: Her colleague, Pete Sessions (R-TX), who also has an adult son with Down syndrome (and whose office did not respond to a request for comment), voted in favor of the bill. They both co-chair the Congressional Down Syndrome Caucus, which I, along with other parents of kids with Down syndrome that I’ve spoken with, find…alarming, to say the least.
My feelings about the AHCA are not at all unique: Virtually every single disability rights group — including ARC, the National Down Syndrome Congress, and Autism Speaks — has publicly spoken out against this bill. According to McMorris Rodgers’ spokeswoman, “The Congresswoman has personally worked with many of these groups over the years, and while not everyone always agrees, she believes it's important to find common ground. She wants everyone to have access to affordable, quality health care. Obamacare has failed to deliver on its promises, and while she understands many don’t think the AHCA is perfect, she sees this as the first step of many towards building a better health care future for every American. She hopes to continue to work together on opportunities to ensure individuals with disabilities can live fulfilling, independent lives.” The spokeswoman also pointed to McMorris Rodgers’ support for the ABLE act, which allows people with disabilities to set up tax-free savings accounts.
The bill is clearly not sound policy for Jo Jo, Cole, or anyone else living with a disability. In fact, I don’t think it’s hyperbole to say that this bill could potentially destroy my little family, along with millions of others. Here’s how.
My daughter could lose her health insurance. When Jo Jo was born, we were beyond lucky to have excellent health insurance that paid for her every need. But when she was five, her dad lost his job. We were able to stay on the company plan through COBRA, but the cost was prohibitive: $2,700 per month for our family of five. When I tried to find other options through private insurance, I got rejected as soon as the company learned my daughter had Down syndrome. Thankfully, by the time our COBRA coverage ended, the ACA was being put into place, and insurers were no longer able to deny or raise coverage due to pre-existing conditions. I found a great plan that covered myself and all three of my kids for just over a thousand dollars a month. Sure, that sounds like a lot, but when you consider what we were paying before — and how much we’d pay covering Jo Jo’s medical expenses on our own, without insurance — it’s a clear bargain.
Photo courtesy of Hallie Levine
Jo Jo’s not the only one in my family who could be denied insurance, by the way. One of her younger brothers, Teddy, has allergies, including a life-threatening peanut allergy, and her other brother, Geoffrey, has a condition called albinism, a super-rare condition where his body produces low levels of pigment, leaving him with very fair skin and a visual impairment. My children currently get excellent health insurance through their dad’s new employer, but if he ever loses his job again, that could change, with grave consequences.
She could also lose her ability to live and work independently in the future. One thing McMorris Rodgers was silent about in her Washington Post editorial are the draconian Medicaid cuts: The CBO estimates that the AHCA will reduce Medicaid spending by $880 billion from 2017 to 2026. Medicaid is how many adults with disabilities, including Down syndrome, get their health insurance.
But what many people also don’t realize is that Medicaid is also crucial to providing the support Jo Jo needs if she ever wants to live independently as an adult: Medicaid helps cover the costs of an aide to help her go grocery shopping, get dressed, make her own meals, and get to work, and the costs of day programs that allow her to stay active and even work in the community. The average cost of taking care of an adult with an intellectual disability is about $88,000 a year, according to a 2014 study published in the medical journal JAMA Pediatrics. Even if McMorris Rodgers and Sessions have that sort of money floating around, most of us don’t.
(McMorris Rodgers’ spokeswoman says, “The CBO score is just an estimate and doesn't tell the whole story. The Congresswoman firmly believes Medicaid should be protected and preserved for those for which it was originally created — elderly, children, pregnant women, and individuals with disabilities. The ACA fundamentally changed Medicaid from a safety net program for these vulnerable populations to a comprehensive, traditional health care plan for working, able-bodied adults. That was never its purpose. By responsibly unwinding the expansion, the AHCA is freeing up funds for these vulnerable populations.”)
My own health insurance is in jeopardy. Jo Jo’s complex needs, as well as those of her brothers, make it difficult, if not frankly impossible, for me to commit to a full-time job outside the home. Thankfully, I’ve been able to remain the breadwinner of my family by running my own freelance consulting business, structuring my work hours around doctor appointments and school meetings. One of the things that’s made this doable is my ability to purchase reasonably priced health insurance. But with the AHCA, that could all change.

My blood boils when I look at this piece of legislation.

One thing McMorris Rodgers and her compatriots like Paul Ryan repeat over and over again, like a mantra, is “you can’t be denied coverage if you have a pre-existing condition.” What they fail to mention is that insurance companies may be able to jack up rates so high that coverage simply becomes unaffordable. The bill in its current form also allows states to seek federal waivers to ignore certain mandates in the Affordable Care Act — including the one that prevents insurance from charging you more for a pre-existing condition. Given the fact that a pre-existing condition can include anything from depression to high blood pressure to simply being a woman (I’m a “yes” to all three) I’m potentially looking at sky-high insurance rates.
The spokesperson for McMorris Rodgers points to the Upton-Long Amendment as a stopgap for these potentially high premiums for those with pre-existing conditions, though critics point out that this amendment would barely scratch the surface of the funding gap.
Given all this, my blood boils when I look at this piece of legislation. I have to wonder: Do McMorris Rodgers and Sessions somehow think they will personally be immune to the havoc this bill could wreak? Or do they view their own children as dispensable as their constituents? There were 20 Republicans who followed their conscience and voted against this bill, including Jaime Lynn Herrera Beutler (R-WA), whose 3-year-old daughter, Abigail, has a rare, usually fatal genetic disorder known as Potter Syndrome.
“The difficulties this bill would create for millions of children still need to be addressed,” Herrera Beutler wrote in a press release. “For the last several weeks, I fought to include my amendment to strengthen the Medicaid safety net for the kids who depend on it for their health care. Protecting vulnerable children is a core purpose of the Medicaid program and when the program fails to do so, it fails entirely. I could not vote to let those kids fall through the cracks.” Herrera Beutler knows firsthand: She reportedly racked up several million dollars of health care costs in Abigail’s first couple years of life, most of which was paid through a combination of the congresswoman’s health insurance and Medicaid.
A congresswoman who votes with her conscience. I don’t agree with many of Herrera Beutler’s political beliefs, but I commend her for taking a stand and voting against this bill despite obvious pressure from her own party to do so.
It’s a shame that Rodgers and Sessions couldn’t stand up for their kids — and mine — in the same way.
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