Going there……

hard working!

hard working!


If you are friends with me on any type of social media you know I have not been silent about our government recently…. I have thought a lot about staying silent on Isaac’s blog, but I decided instead to use it to explain why I am so vocal, and honestly – so angry.
As the days go by Isaac and his freedoms are at more and more risk. Just a few hours into this new administration an executive order was signed regarding the Affordable Care Act. In this order we see that the act will start being rolled back, so far with no replacement in sight. Rolling back lifetime limits, pre-existing condition clauses and the ability for a child to remain on their parent’s insurance until the age of 26 DIRECTLY impacts Isaac and so many like him. It means Isaac may someday have to choose a job solely on the health insurance they can offer him, not on his own choice of career. It means that my son, who has already worked his way through at least two lifetimes of care could be at risk of losing his insurance if we are not careful. It means that my son, and his laundry list of pre existing conditions may be at rick of not receiving insurance simply because of what he has been through in his life.
Along the lines of healthcare are the imminent risks to Medicaid. Medicaid does so much more than most people realize. Medicaid picks up costs for us that Insurance does not pay. The big one being Isaac’s home health nurses. The nurses that care for him while we sleep, and work. The nurses that allow us to keep our son at home instead of in the hospital so many times when he is sick. Insurance doesn’t pay for those services for Isaac, Medicaid does. Ironically, I almost didn’t apply for Medicaid for Isaac – I never thought we would need it. Thank God we have it.
Isaac is on a Medicaid Waiver – because he needs technology to live he qualifies for a “technology waiver”. These waivers came about in most states as the result of legislation signed into law by Ronald Reagan. During his Presidency a family with a child (Katie Beckett) came to light. They had a beautiful little girl, with medical needs. Their insurance would only pay for her care if she was in the hospital, she was there for her first three years. Ultimately, the legislation that passed, named after Katie Beckett, allowed children with medical needs to be cared for at home, through the use of Federal funds. President Reagan researched the costs, and realized that keeping a medically needy child at home costs 1/6 of what it costs to provide hospital care. It was that easy.
Now the waiver programs, and Medicaid are also at risk. Our new Health and Human Services Secretary would like to change Medicaid – to a program that would require elimination of some programs. Programs like the one that keeps Isaac cared for.
And finally, our new Secretary of Education. Betsy Devos was unaware that IDEA (the Federal law that protects all disabled students) was a Federal Law. Betsy Devos, the Secretary of Education who would like to promote “school choice” and has never been a supporter of public schooling. The public schooling where my son receives special education services, has learned to read, is a math superstar and the place where he has finally found his voice.
So, we are angry. We are angry enough to fight, on so many levels. Our silence will not be found, because we simply cannot afford to be silent. We cannot afford to sit by while our Government takes so much away from our boy who has fought so hard just to be here.
We are not angry at any of our friends or family who voted for, or still support our President – our country was founded on choice. We are however angry at the people who are in positions of power and trying to take away so many things that Isaac needs.
This is personal, and we won’t stop fighting.

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