I wrote my Republican representative to the U.S. House of Representatives this morning. I asked for a meeting to discuss their opposition to the S-CHIP reauthorization and reform bill introduced last fall. And I wrote a letter of congratulations to Senator Joe Biden as he joins Barak Obama in a bid for the presidency. I am still undecided regarding the presidential election, though I lean heavily towards Obama/Biden. However, I am steadfastly Democrat in my home state, converted completely just this week after seeing what Republicans (who have been in power for several years now) have done to Medicaid and the waiver programs established to support parents like us who desire to care for children with disabilities in our homes (and not send them to live in institutions).Below is part of the letter I wrote to the Obama/Biden campaign. Please consider asking your U.S. senators and representatives to support the reauthorization and reform of SCHIP.
I've grown increasingly dissatisfied with the GOP over the course of the last ten years.
What sealed the deal for me is the outrage being perpetrated on the disabled in our state. We have four children, two of whom have severe medical conditions. The oldest and the youngest were born with congenital heart defects and both have needed multiple heart surgeries (we're at 6 total between the two of them, with a 7th coming up next year). Our eldest, our daughter E___, suffered a brain injury during her first year and now is struggling to overcome severe cerebral palsy and a host of other complications. She is in the 3rd grade, has a great sense of humor, and continues to amaze and astound the doctors with what she overcomes.
We are very blessed to have great health insurance through my husband's employer, but even a good policy doesn't cover all of E___'s needs. She needs a touch-screen computer to speak, but that isn't considered medically necessary, so we had to find grants to cover the $7500 cost so that she can communicate with us. She needs a handicapped-accessible home, but insurance doesn't cover modifications to a home. Nor does it cover diapers since she has been unable to potty-train. Transporting her in a wheelchair requires a van with a ramp and tie-downs. We have a makeshift system that, cobbled together, cost $3500. We are trying to find a way to pay for a new van with a really good system for her, but the conversion alone is $23,000!
SCHIP funds are used in my state to help fund a waiver program which looks at each specific child's needs, without considering the family's income or insurance. E___ was awarded the smallest waiver about 4 years ago, which provided her with a Medicaid card and a few thousand dollars to make modifications to our home, vehicle, and pay for 5 hours a week of assistance in our home. As you can see by doing a little math, the money doesn't go far at all because the cost of everything is so high. Medicaid is also getting some bad press in [my state] for denying the claims of kids like E___who need wheelchairs and other medical equipment.
Republicans, as you know, have refused to reauthorize or increase the funding allotted to SCHIP, leaving children like my daughter trapped in their homes, trapped in equipment that is too small or no longer helps their bodies (and in some cases actually hurts them), and without safe transportation. I had thought that it was simply a lack of funds, but it turns out that the problem is MUCH more insidious.
E___ was just given the "Cadillac" of waivers, the ____ waiver, and because of her extensive needs, qualified for $119,000 of funding support per year. We were initially told that we could use that money to purchase a van and the conversion system we need for her, no questions asked. Now we are being told that we can use no more than $10,000 per year on equipment for the van (which, as I mentioned before, costs $23,000), and nothing for the van itself! The bureaucrats in [my state's capitol] have put all sorts of artificial limits on the use of this money, I can only assume so that they don't have to actually pay out! And when I add it up, these limits effectively puts about $50,000 into a virtual "no-man's-land" where it's labeled as E___'s waiver money but in reality is completely inaccessible to her!
I hope and pray that we can get sensible, thoughtful, reasonable people into our state and our nation's capitol to remedy this situation and provide real, tangible, makes-a-major-difference-in-the-quality-of-life help for children and adults like my daughter. People who are trapped inside bodies that don't work, but who have minds and spirits, hopes and dreams, just like ours. And who deserve the same opportunities and kindnesses that anyone else does.
Best wishes to you!
Joy
