I know, I know I said I was going to be more productive this year and write on my blog at least a couple times a week.
Here Is what's been going on In my life. The Caregiver Bill for spousal Payment Is well on It's way. It was brought forth to the proper committee Wednesday March 13 2008 and the vote was unanimous It passed to the Senate Floor. After the Senate approves It then It will go to the House. After the House approves It then It will go for the Governor to sign. I think the hardest part Is over getting the committee to say that It Is a Important Bill and they felt It should go through to the next level. We have had several articles In the paper about our Involvement Is the bill. Dennis and I were ask to stand In front of the committee and tell our story but It was just to much to get Dennis there this time of year. So much sickness I didn't want him to be exposed to any germs. We declined but were ask to write a letter. Here Is the letter that I presented to the committee.
Hello my name Is Kathi Kupferschmid. I am a full time Caregiver for my Husband Dennis who has had A.L.S. Better known as Lou Gerhig's Disease for nine years. Five of those years have been spent on a ventilator. I would of loved to of delivered my message In person however, the simple truth Is that my Husband can not be without me for that length of time. I appreciate this opportunity to speak about this Bill and how It would affect me.
I strongly encourage you to pass the caregiver payment reimbursement program that is currently under review. This bill would provide for the use of qualified family caregivers in the provision of home health aid services.
It has always seemed odd to me that our government will pay a family member or stranger to provide services to a person that needs 24 hour care, however they will not provide payment to a spouse. I have found that by being a spousal caregiver, I am completely invisible to the government. 90% of people caring for a person with ALS end up putting the person in a nursing home because of the over burdening task of providing 24 hour care. They are so overwhelmed that they hand over their spouse and the government then steps in. The person is put in a nursing home; our government then pays hundreds of thousands of dollars a year for half rate, undignified care. Wouldn’t it be more cost effective to pay spouses a fair monthly wage rather than the overwhelming charges paid out in nursing home and hospital costs every year?
Statistics show that to care for a person with ALS, the cost is up over $200,000 per year. Most of that is in home care. I provide this care myself, because to be honest, no professional person or other family member could provide the same endless loving care that I provide for Dennis. Believe me, I have had to train all the professional health care providers that have come through my door.. ALS is a disease like no other. Its progression is relentless and cruel. My husband is completely paralyzed; he cannot talk, swallow or breathe on his own, yet his mind is completely unaffected. He still feels a need to move as well as feels every agonizing unfulfilled itch. . My presence in Dennis’s life is not an option it’s a necessity.
Dennis receives a small social security monthly benefit; he also gets Medicaid provided for him because the government thinks he cannot afford to pay for health insurance. I find this unbelievable…I am his spouse…the government considers us “one”..That’s why they won’t pay me to take care of my husband…yet…who do they think is paying for MY health insurance…Dennis is. Shouldn’t health care be provided for me also, since I cannot work outside my home?
Not only am I not being compensated, but also I am being penalized for caring for my husband myself. Currently because I haven’t “worked” I have stopped accumulating my own social security credits. I have also lost the benefit of qualifying myself for social security disability …to the government, it looks like I’m sitting around, not working and the truth is that I am working a 24 hour a day job and working harder than any “Paid” person. The paid person gets to go home after an eight-hour shift also. I don’t. Another thing, I don’t think an employed person on the job would be able to be at their job 24/7, 365 days a year, year after year, and not get paid. Would you?
I have also given up any social life as well as the simple pleasures of being a free human being. By that I mean running to the store, grocery shopping, going for a walk, simple things you take for granted every time you step foot out your front door. I leave my house maybe 6 hours a week. I cannot even leave the house to do yard work. Planning the simplest things such as a haircut or doctor appointment is an overwhelming effort. I am not complaining, I wouldn’t want to do anything else. I just want you to acknowledge that there are people desperately trying to survive and just need a little help.
I understand that a lot of people might take advantage of a program like this. That is why I feel there should be very strict guidelines in order to meet the requirements and receive spousal caregiver payments.
It’s really impossible for me to plan my future. I cannot plan for even future needs on our home, vehicles, medical needs, future financial planning, and I cannot work outside my home. I have the weight of the world on my shoulders and very limited resources. I want to do well and succeed, and plan for my uncertain future. I’m trying to hold my family together. Please help me.
Thank you for taking the time to read and understand my life. I am not asking for something for nothing.
If you know of anyone that would benefit from this Bill please leave a comment and I will get In touch with you and tell you how to go about getting that person some help.
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