My dilemma with Social Security is so frustrating that it’s become exhausting to even think about. BUT I’m so thankful for the ongoing support from everyone that I want to keep you all in the loop.
The Social Security Administration has yet to overturn their decision to terminate my 1619B status, which is a federal designation that allows me to work and receive attendant care services. Meanwhile, I just had my hearing with the Department of Human Services, which wanted to terminate my services since SSA terminated my 1619B status. Up until the eleventh hour prior to the hearing, my mom and I were scrambling, calling various law practices and advocacy groups in search of a solution. Luckily, from one of the advocacy groups, we found a bandaid for the much larger problem. There is a state program called Medical Assistance for Workers with Disabilities, or MAWD, that also allows people with disabilities to earn an income and receive services. The reason this is only a bandaid is because the income limit for the program is not much higher than my current salary. So, while MAWD does not immediately rob me of my job, it does rob me of my career aspirations as I have almost no room for advancement. Unlike MAWD, 1619B takes into account the cost of the services I receive, which exceeds $100K; so, the income limit is much higher.
What’s more frustrating is that my case worker at the Department of Human Services never offered me MAWD, even as a temporary solution. Then, when I first inquired about the program on the day before my hearing, the case worker told me I wasn’t eligible. So, I called my contact at the advocacy group, and she sent me the policy that outlines the eligibility criteria. Finally fully armed with all the information I needed to enter the MAWD program, I had to educate the DHS case worker on the program, which is administered by DHS. This entire experience made me just wonder how many people like me sit at home and don’t work because when they call DHS for help entering the workforce, they cannot help!
Lastly, I just can’t help but to feel like this is exactly why there is stigma attached to disability. Yes, people often feel sympathy and pity for people with disabilities due to their limitations resulting due to their disability, which I don’t fully understand, but people with disabilities barely stand a fighting chance to make the best of their lives because the system is structured to foster dependency upon the government, even against their will and abilities. This is very discouraging since I’ve created a brand and written a book to teach the opposite. On the bright side, I can’t wait for school to be back in session so I can get back in front of America’s future and share with them my book and view on disability.