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Submitted by Anonymous on
May we take this a step further and provide a case manager for those of us with chronic disabilities? I am sick and tired literally and then I coordinate all of the specialists and authorizations and medications and paperwork for benefits, waiting in line at SSA, waiting in line at DCFS all the while trying to gain knowledge on what the up and coming treatments are for multiple chronic conditions. And when I do find a new treatment or medication I start the whole process over again (and I am usually not done with the last latest and greatest that I had found)! I do this for myself and my 21 year old daughter who is afflicted with the same illnesses. I know that my daughter and I can be better health wise but trying to coordinate all of this is exhausting. We need an advocate in a medical capacity to assist us in the coordination of care, benefits, employment, accommodations, the whole gamut. An analogy...now we all go to the hardware store, fruit market, the mall, meat market, furniture store etc. We need an Assistance Mart, if you will, like a superstore. At the Assistance Mart everything that those of us with chronic disabilities need are conveniently placed in one store. I am positive that both my daughter and I would be well enough to live somewhat normal lives, work/go to school , be productive citizens (at least an increase of 50%) except all of our "good energy" is spent on jumping through hoops and over hurdles instead of living abundant lives. This, in my opinion, would be a win win.I also have ideas on implementation and I gather that others who are, or know someone who is disabled do as well. Thank you so very much for listening. And if you need to perform a cost analysis study on this concept please look no further. We volunteer! [name withheld for privacy]
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