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Vaccines and public concerns
My daughter, Quincy, was injured by a vaccine. She was a perfectly healthy, happy child and within six hours of her 2-month DPT she began seizing uncontrollably. The result of that singular incident changed her life and our lives forever. Because of this, I have devoted myself to holding the government and the pharmaceutical companies responsible for safer vaccines…vaccines that do a better job of protecting our communities from communicable, infectious disease while at the same time not harming our otherwise healthy children. Until there is a commitment to providing vaccines with as close to 100% effectiveness with zero risk as possible I will continue my work. We, as parents, have every right to demand that the bar be raised much higher when it comes to many, many vaccines we are being told to give to our children. Today I serve as a consumer representative to the Advisory Commission on Childhood Vaccines (ACCV) and as a vaccine safety expert and a consumer representative on the Vaccine Safety Work Group (VSWG) of the National Vaccine Advisory Commission. Both positions allow me a voice heard by decision makers at Health and Human Services. It is a difficult task, as my views as a consumer represenatative are generally balanced by multiple representatives from health care, the pharmaceutical industry, and government and my story is not one that is popular. But, I firmly believe that change will occur and I hope I will continue to be given the opportunity to shape that change. Although I will not use my blog to persuade your opinion about vaccines in one way or the other, I will use this forum as a way to inform people of the opportunities available to give their own input into the process. There are many divisions within the government that are working on the issue of vaccine safety and they all, at one point or another, will request public input. I truly believe in this process and in the importance of people voicing their concerns. Next week I will again make the very long journey to DC to attend the quarterly meeting of the ACCV. This meeting is open to the public and allows opportunity for public input. Specific meeting information, including directions or the toll-free teleconference number, can be found by clicking on my ACCV link. Additionally, the VSWG will hold a series of public meetings in November, December and January that will seek public input into the Immunization Safety Office 5-year Scientific Agenda. If you have an interest in participating please find information at the HHS-National Vaccine Program Office website (found by clicking this link). And, finally, my role is to represent the consumers, people just like you who are raising children and struggling with your own questions about vaccines and their safety. Feel free to contact me directly to provide input or ask questions and I will be sure that your concerns are heard and your questions are answered to the best of my ability.
Purchasing durable medical equipment
You wouldn’t believe how much medical equipment we have purchased over the years for Quincy. Therapy equipment, wheelchairs, standers, balls, bolsters, bathing equipment, etc… And many, many wheelchairs…too many to count No matter how great a product sounds you can count on two things…one, it will be incredibly overpriced and two, it will fall short of your expectations. My current problem is Quincy’s wheelchair. It is a fine piece of equipment but maintaining it is another story. It has taken five months, FIVE MONTHS, of badgering the supply company and their wheelchair technician to grow and adjust it properly and the work is still not complete. By the time the tech is finished with her work the chair will need to be grown again! What is the deal with this process of buying medical equipment? First, the prices are insane and it’s frustrating to think that at several stages in the process many people are making money off of our children’s disabilities. I expect people to help me and charge a fair price, but I am sickened by what insurance companies are billed and what is charged for simple equipment. I have a bill in front of me right now for a $175 right footplate for Quincy’s chair (that’s the little metal thing she rests her right foot on), a $175 left footplate, a $156 wheel and almost $170 in labor. That’s a $700 bill to change out the footplates and fix a wheel with a bad bearing. Insane! And, this isn’t the final billing. No wonder my insurance rates are so high. One thing I’ve started doing is finding dealers who are willing to work with me directly. Adaptivemall.com is one of those great places. They have knowledgeable staff and are extremely helpful. I now use them for any purchase that isn’t terribly complicated, such as bath and bed supplies and therapy equipment. They have also been great when purchasing lightweight, travel wheelchairs. The only downside is that you have to handle your own insurance and that can be a hassle, but I’ve found it’s a hassle even when others are working with the insurance company. Sometimes I’d rather just be the one to handle the claim and do the required follow-up. When it’s a product that is too complicated to order on my own, like a wheelchair, then I will go ahead and use a local medical equipment suppliers. I guess the upside is that they handle the insurance and are available for follow-up maintenance and adjustment, but most places still leave much to be desired. If you talk with any person raising a child with disabilities they will tell you that some of the biggest challenges we face is finding good companies for our business, be it medical equipment dealers, respite and care provider services or even doctors. If you know of someone in any of these fields that is worth your business, tell everyone you know! That’s what I do!!
First post
Today I have begun my newest challenge…venturing into the world of blogging. Thankfully, my brother has a blog and has been able to help me get this set up. However, even as I write I have no idea whether or not this is going to show up anywhere. So, I will put down some text, click on another button or two and see what happens. Here goes nothin…
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