I'm wondering how many other families there are out there who have heart children that have been deemed "uninsurable." Here is our family's story...
Our daughter was born in September and had open heart surgery almost immediately. My husband's employer was AWFUL about giving him time off to be with his tiny newborn, and he soon began to look for another position elsewhere. Fast forward to April of 2007, and he took a contracting job for a major financial firm. Because he is not an employee, he does not get benefits. I am a small business owner, so we made the assumption that we could still find somewhat affordable insurance.
The reality is that we can not find ANY insurance that is willing to provide coverage for our "heart" baby, who had the ASO switch in September 2006. We have been told that it will be a total of five years before insurance will be considered for her, but that the rest of our family may be covered.
It's a sad state that our healthcare system is in. I would consider our family to be "middle class," yet we have no access to insurance for our daughter. We have been told time and again that we would be better off in terms of health care for her if we were on government assistance (welfare). Every time we walk into the pediatrician's office (which, of course, is often) it's a huge hit.
Has anyone else faced this dilemma? Email me at learnaboutchd@gmail.com.
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I'd like to share our story. When I got pregnant with our 1st daughter I was covered by my employer's health insurance. When we found out about her heart issues - HRHS, pulmonary atresia, Ebstein's Anomaly - we were told we'd have to deliver in the lower 48 as we live in Alaska and there are NO heart surgeons here who do kids. We chose Seattle. The Children's Hospital said I should apply for Medicaid; a lot of their kids from AK were on it, they said. I at first thought "no way" because I thought that since I have a job and insurance that I didn't need it, wouldn't qualify. We got on and were lucky we did as her delivery, 1st surgery, and all costs for her 1st year were covered 100% - including her 2nd surgery, travel to Seattle, staying there, as well as all the PT and OT services she needed. When she got to be 1, we heard about a program called TEFRA, which in Alaska also covers kids with complex medical conditions; provided they also meet a certain "level of care" threshold. She got on that and was covered until it came time for our 2nd renewal - before she turned 3. They said she didn't meet the "level of care" requirement. We said "BS" and appealed, got an attorney, the whole 9 yards. We said that she has the complex condition, and she hasn't even had all her surgeries - she still needs 1 more. Plus she takes a Heart med and aspirin, and she still needs therapy services - documented now by the school district, since she qualified for special needs preschool due to her need for therapy. They still denied us - their rationale for deciding she didn't meet the criteria??? I worked and I had to put her at a babysitters house!!!! So now I am lucky to work for a large company, widely recognized as one of the best places in the country to work, so I get good benefits (thank heavens). Before I got hired, I was pregnant again, and in a last ditch effort to provide full insurance for my daughter, I applied for Medicaid again. I got on cause I was pregnant. She didn't. There are 2 different income levels they use for qualifying you, and she was evaluated on a lower one because she technically already had coverage (I was a contractor for the Feds and got the barest of bare bones coverage from that). However, when I got my new job, during open enrollment, I saw that a high deductible plan covered everything at 100% after you meet the deductible. I quickly signed up for that for this year because I was pregnant, so I knew we'd meet the deductible. I also knew I would never have to pay a penny of it because Medicaid would pay all costs insurance didn't, and by the time our daughter needed a 3rd surgery, this last March, I thankfully did not have to pay a penny of it - though we did have to pay for airfare, and a token fee at the Ronald McDonald house, as well as food. Next year, I don't know what I'll do, I just pray she stays healthy and out of the hospital.
Thanks for letting me share!~
Laurel Nelson
Anchorage Alaska
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