I have suffered a severe and unexplained seizure disorder since the age of 15 and am now an adult who is unable to perform the necessary daily tasks in order to keep my self and my home safe, clean, and maintained. I am under doctors orders to be looked after 24 hours a day and to not be left alone in the care of my two children due to my condition. As a resident of the great state of California I was lucky enough to get help from a program called IHSS (In Home Supportive Services). When I first started as a client with IHSS in 2005 I received a total of 89 hours per month which allowed me to hire someone to come into my home and help me with the things I was not able to do. While the 89 hours did not cover any child care or 24 hour supervision it did make it easier to afford external help when family could not be home with me. I'm not sure who sets the guidelines for this program or why they have done what they have to me but it has left me in a position where my safety and that of my children is in grave danger and no one seems to care. My hours over the last year have been steadily cut back and I was left with a mear 34 hours a month. I tried not to complain in light of California's budget crisis but mind you I can not do my own laundry, shopping, cooking, yard work, even taking a shower each day requires someone to watch over me and see that I do not drown during a seizure. Yesterday I received a letter stating that my hours were again being cut, this time down to 15 per month! I am recently married to a wonderful man who all but stopped his life and career to take care of me and we in turn are forced to struggle through each month supporting a family of 4 on a disability check, less than 1000$ a month. My husband began as my provider for IHSS 2 years ago and that has allowed him to stay home and be my 24 hour provider and be compensated for a little bit of it. If not for that small compensation from IHSS he would have had to stay working at his 10$ per hour job and pay out of pocket 8$ per hour for someone to come into our home while he was at work to care for me. That doesn't make much sense does it? Now we have some pencil pusher who has likely never struggled or wondered where dinner would come from tonight or how she would get her children school shoes telling us that because we got married we are to be punished with another cut... Basically they are sending the message out to every disabled person that it is OK to shack up and live with someone but you better not get married because love will not put food on the table and you will be punished for getting married. All of this means that my husband will have to go to work outside the home and because we cannot afford to pay someone else I will be left alone with my children for 8-10 hours each day. Who is going to step up and admit fault when something happens to one of my kids or when I stop breathing during a seizure with no one home to call 911 or start CPR? Mind you, this scenario is not a long shot possibility that "could happen someday", it is my life each and every day. Another day in Lassen County California, I guess I should be thankful to still be alive because their decision could very well mean that my children will be collecting my disability check after my next seizure.
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