https://www.facebook.com/beth.dehoff/videos/10154378407631769/
Hi. I’m Beth DeHoff, and I live in Plainfield. I have an MPH, which is a master’s degree in public health, and I’ve spent the last many years studying maternal child health policy and serving children with special health care needs and disabilities and their families. Even more importantly to me, I’m the mother of one of those children myself. The Affordable Care Act, and the Medicaid waiver for people with disabilities, has saved my son’s life and our family’s livelihood – and the same is true for many of the families I serve.
Todd Rokita should probably know me. I’ve written to him, emailed him, called him more often than I ever called my mother in a month’s time, and have even made him the subject of blog posts, tweets and Facebook posts. I’ve had lunch with his Danville director, who I’m sure is now not regretting at all his invitation for me to email him anytime. Thanks, Joe.
I thought health care for vulnerable citizens would be a common concern for us, given that Todd and I both have children with special health care needs. My son has Down syndrome, autism and is a leukemia survivor; his son has Angelman’s Syndrome. But my pleas to him asking him not to do a wholesale repeal of the Affordable Care Act and not to block grant Medicaid have been answered by form letters bragging about his 60-plus attempts to repeal, replace or defund the ACA. He has not yet responded to the untenable situation these actions place my son and family in. His regional director asked me to show how we can protect my son and other vulnerable people while saving money. I’ve sent him some ideas about that. I’ve also sent him the idea that there are many places to save money, and I find it distressing that the first place the congressman goes is the health and life of our most vulnerable citizens.
So here I am, a rather unlikely activist brought up in Republican home, trying to help the rest of the world understand what the Congressman seemingly cannot. I want as many people as possible to consider the human consequences of repealing the Affordable Care Act without appropriate protections of its benefits and ways to pay for them, and of block granting Medicaid, for vulnerable Hoosiers with disabilities and their families – like my son and our family.
The ACA made my son Kyle insurable with his pre-existing conditions. It made our lifetime maximum coverage go away -- before the ACA, Kyle would have lost coverage by his teens and been completely uninsurable in any other plan. In addition, his Medicaid waiver allows him to have important secondary coverage and allows us, his parents, to be able to work, pay taxes, and contribute to his future and our community. Before Medicaid, we averaged $13,000 a year in out-of-pocket medical expenses after our employer insurance, which paid pretty well. Without the ACA, Kyle would have been kicked off our insurance by now, and any other insurance plan would be out of the question due to his pre-existing conditions. Without Medicaid dollars for a waiver, I would be unemployed – because there would be no nurse available for him while I work -- and then we’d be eligible for all sorts of public assistance – not the outcome most conservatives – or most families – want. My questions for Rep. Rokita are simple – how do you plan to protect health care access and affordability for sick, disabled, elderly and poor Hoosiers? If you fail to do this, how do you expect to deal with the added expenses of the stress on public programs, the rise in public and private health insurance premiums, and rising health care costs as hospitals struggle to again manage the uninsured and very sick who show up in their emergency rooms?
While we’re waiting for him to answer those questions, here’s some things we can do.
1. Don’t argue to keep the ACA the same. Ask for it to cover more people, not less. Ask for it to keep the protections for people with pre-existing conditions. Ask for it to not kick people off coverage after they hit a maximum. Ask it not to charge different rates for women, the disabled, or older people. These messages are working, and slowing down the rush to appeal. Keep it up.
2. Fight against block grants and capped funding for Medicaid. A Medicaid block grant will slash the amount of federal dollars given to Indiana for Medicaid and leave it up to the state for how they spend their reduced budget. This imperils people who have no voice, like my son. Be their voice.
3. Communicate clearly that the health savings account idea they are so excited about is not a solution. How are poor people, people with disabilities who aren’t given the opportunity for a living wage, and senior citizens in nursing homes supposed to contribute to a health savings account? For that matter, how can our working class families who work 2 or more jobs and still struggle to pay for rent and food supposed to kick in their “fair share” to their health savings account? Even today, health savings accounts only work for the employed and well – have a catastrophic illness, or even a visit to the emergency room, and your health savings account is woefully inadequate unless you have a heck of a lot of expendable income.
My biggest concern about Congressman Rokita is that he doesn’t seem to understand the lives of real people in his district. When I communicated to his director that most parents of children with disabilities are facing significant financial struggles and resulting unmet medical needs, he said “yeah, I’m sure that’s true for some families.” Not some. Most. That’s well-established and evidence-based.
Based on my communication thus far with the Congressman and his staff, I truly believe they just don’t get it. It’s up to us to try to make them get it. While constantly reaching out to the Congressman is up to us, it’s up to him and his staff to decide whether they care. And if they do not, it’s up to us to resist – and persist. Thank you.
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