Yesterday, I began to describe my odyssey towards gainful employment. It is a long and complicated journey. Here is part two.
During this same time, a friend from my college paper encouraged me to approach The Huffington Post. I was hesitant, as I didn't want to compete with the CCD, but eventually I sent them a sample, which they accepted. People really like the Huffington Post and it looks impressive and I do reach a national audience, but most people don't realize that they don't pay their bloggers. I am doing this great work and getting great exposure, but still without any financial benefit. People ask me to see more and more, which gets tricky, too.
During this same time, I am taking Advancing Strong Leadership in I/DD training and I was offered a blogging position by a fellow classmate. I was to write a monthly blog for thirty dollars. I wrote the first blog and was paid, but nothing transpired after that.
Additionally, I worked for a year and half putting together a salon series for our local Winston Museum. I interviewed countless people and spent hours researching and writing. I organized and participated in two formal presentations. I was gifted two gift cards to a local restaurant and received a small nominal fee. I am not complaining, but that is a huge amount of work for very little financial reward.
I also volunteered for NCYLF (NC Youth Leadership Forum) last summer and although I never applied, I was put on the planning committee, which demonstrates that I do a good job in this area, and yet another volunteer experience that pays nothing.
I sit on four impressive boards and have a lot of specialized knowledge, but they don't pay either. My mother reminds me that I am paid in other ways like knowledge, experience and connection, but those don't put food on the table or help me to live independently. It costs me money to be on these boards. I have to pay for transportation, hotels, meals while traveling, and having an assistant.
It is true that I haven't applied for many other jobs and have three good reasons why I hesitate to do that.
The local paratransit system is another barrier. The application is 15 pages long and requires a doctor visit. It is more hoops that I have to jump though. This is a barrier that I haven't chosen to deal with at this point. I do own an accessible van, but have to rely on personal care providers or family to drive me everywhere, so I am limited a lot of the time by their schedules and such.
I am very lucky to qualify for a lot of personal care services through both VR and through Innovations, but they present their own barriers in some ways. I get 40 hours and it pays 12. dollars and hour, but I can't offer benefits or promotions, which most people need or want, so it is extremely hard to retain good pcas, as they have to move on in most cases. Anything over a year is very lucky for me. It is very understandable. They get better opportunities and have to survive, too. The other service only pays 8 per hour and no benefits, so it is even harder to find and keep them. I don't blame them at all. It isn't much to offer people. At the same time, I have had pcas that want to come back, but it's hard to justify it when I can't offer them much. It makes it very hard. The full time salary of these people falls below the poverty line, if they have families. So, we're all in the same boat. They like me and want to stay, but it is difficult for them to do so.
Having a good pca impacts my employment, even though it isn't directly related. Because of the nature of my disability, a pca is very important for me to have. The physical component of my disability is pretty severe, so I need a lot of help at work and also at home. They need to be somewhat educated, articulate and possess computer, assistive technology, scribing and typing skills. Another thing that makes it tricky is, I have to travel quite a bit and it can be difficult to do that with a pca. They aren't always willing or able to travel with me and this adds additional expense.
A lot of people are shocked that I don't get paid much. They see me doing so much, that they assume that I am doing well financially, which leads me to the third barrier in this category. Hypothetically, if I were to get a well-paying job, I would most likely lose my benefits. As the regulations currently stand, anything I make over 85 a month, the governments reduces what I make by 50 percent and I lost my benefits. These are essential benefits, so it is important that I stay poor. I would love to improve my qualifications by getting a masters or a law degree, but still I would run into these same problems. I would basically be in the same boat anyway.
I'm told there is Medicaid available with for individuals with disabilities through the Health Coverage for Workers with Disabilities (HCWD) Act (NCGS 108A-66.1), but I haven't qualified for these yet, as I don't make nearly enough. So, I'm stuck.
Surprisingly, this is not the end of my story. My saga will continue in Part Three and I promise there will be a bit of good news.
That's how I try to roll.