When you have a chronic illness that affects multiple functions, your body quickly becomes a major focus in your life. I spend over 8 hours a day doing physical therapy routines, managing my feeding tubes and pump, setting up medical care, working with aides, and doing what I need to do to deal with pain and other symptoms. During periods when I am having new or worsening symptoms, I can have healthcare appointments 5 days a week. Since I use mass transit it usually takes an hour to an hour and a half to get anywhere, making an appointment an all day affair.
At the beginning of 2016 I started having a lot of trouble taking care of myself because of my illness. I had been showering once a week or less and had almost no food in my fridge. With some gentle prodding from friends, I finally realized I needed to get aide help. In April, I started on a program with Medicaid called Consumer Directed Attendant Support Services (CDASS). CDASS lets me hire aides to help me based on my needs. To qualify, I needed to be at risk for nursing home placement because of my illness. I can choose who to hire, and to schedule them for the hours I need at the time I want. Aides help me with showering, personal care, cleaning, cooking, laundry, and shopping. This has allowed me to get out of crisis mode and back to a point where I have time and energy for more than just surviving.
With CDASS I work with an agency that then handles the financial side of the situation. I am assigned an employer identification number with the IRS and a ‘business’ is set up in my name through which I hire and pay for aides. I report the hours my aides work to the fiscal agent, and the agency handles pay and taxes. All of this to help me live independently and to care for my body. I am grateful to have CDASS available to me, but managing aides takes a lot more energy and focus than I thought. However, without aide help I wouldn’t be able to live independently in the community. If it weren’t for CDASS, I would never be able to afford aides for the number of hours I need.
I often quip that having a disability is a full time job. I am now no longer the only ‘employee’ of my body; I also have three aides that work for me. I can’t help but feel that, in a way, that makes my body a corporation. With the time and energy it can take to manage chronic health issues, I often feel like a CEO, personal assistant, manager, and employee. They say the body is a temple; in my case my body is an LLC. My question is when do I get a pension and paid vacation time?