I don’t wade into political topics all that often. I’ll just say it’s not my particular area of expertise and leave it at that. But I do want to share the story of a family. I’ve known Gretchen Meinhardt since we were in college. A few months ago, I shared a piece she wrote for CNN. Today, I am sharing a copy of the letters she has sent to her legislators chronicling her experience with the Affordable Care Act for her family. Primarily, I share this so that a solution might be found where all children, and adults for that matter, receive the best healthcare possible, regardless of where they fall on an income scale. I don’t really know who might read this, but maybe Gretchen might also connect with other parents who are in a similar situation. I have included her email, for this purpose. If you have a similar story, please feel free to share it.
Guest Blogger: Gretchen Meinhardt
Perhaps the Affordable Care Act has helped some people, but it has been devastating for families like mine who struggle to care for a child with disabilities. When we adopted our newborn son Raef in 2001, we had no idea what we were in for, not only as new parents, but also as caregivers for a baby with significant, lifelong healthcare needs. Our joy as new parents soon turned to fear as he began having seizures – 200 to 300 a day – that were impossible to control. At only 8 months old, he had radical brain surgery (a right hemispherectomy), which was scary, but such a blessing because he has been seizure-free for 13 years now. The seizures and surgery left him partially blind and with limited use of the left side of his body (cerebral palsy), but he is an active eighth grader, with a delightful sense of humor and zest for life. The seizures and subsequent disabilities are not Raef’s only challenge, however. He also has Neurofibromatosis Type 1 (NF1), a genetic condition which causes tumors to grow on the nerves. At just 2 years old, he endured 14 months of chemotherapy to treat a tumor on his optic nerve. That tumor has remained stable, but Raef faces ongoing NF-related challenges, including learning disabilities, ADHD, sleep issues, and fine motor difficulties. In spite of all of these challenges, we wouldn’t trade Raef – or his younger sister Gwyn, his biological sibling whom we also adopted – for the world. We love them with all our hearts and delight in being their parents. The thing that breaks my heart and keeps me awake at night is that now, thanks to the Affordable Care Act, we may not be able to afford the medical care our son needs. For many years before the ACA, we were blessed to have excellent health insurance through my husband’s work as a safety manager with a large international company. However, when the country was preparing for the implementation of the ACA, that company chose to reorganize in order to afford the increased health care costs and requirements resulting from the ACA. My husband was among the “middle management” that was laid off to pay for these increased costs. And there went our health insurance, right along with his job, because we could not even afford the COBRA premiums. Since he was laid off more than a year ago, he has been actively searching and interviewing for jobs. But like many in his position, he has struggled. Although he is working temporary contract jobs in safety management, he has been unable to find a full-time position, with benefits, in his field. In addition, I work as an adjunct college instructor, and while it is relatively easy to find part-time positions, it is becoming increasingly difficult to find full-time college teaching positions that offer benefits. So far we have managed to piece together health coverage for our family, but only because my husband is a veteran and can get VA healthcare, and because we reluctantly put our children on state health insurance (Medicaid) until we could find employment with benefits. However, it was next to impossible to get state coverage for the children, even though we qualified based on income after my husband lost his job. Now we live under the constant threat that we will lose the children’s Medicaid coverage before we are able to find permanent, affordable health coverage. During Medicaid’s latest notice they would be dropping coverage (which we are appealing), I once again priced health coverage through the ACA marketplace. If we go through the marketplace for health insurance, the medical costs in 2015 for my children and me will be between $16,000 and $30,000. This includes premiums, prescriptions, and out-of-pocket medical costs. (We always meet the out-of-pocket maximum with our son by about Valentine’s Day.) It’s hardly “affordable,” but with a child like Raef, health coverage is hardly optional. As the New Year and a new session of Congress approach, I ask that you take a serious look at the ACA and consider whether it is truly ensuring “affordable” health care for Americans. If you would like to know more about my family’s experience, please feel free to contact me. I am happy to help in any way, even if it takes meeting with legislators or testifying before Congress. Thank you for your careful consideration of this important issue.
Kansas City, Missouri