This is a guest post from a citizen activist, Ashley. Here is her incredible story.
My name is Ashley Volion. I have Cerebral Palsy and require personal care attendant services in order to live and work independently. I have received both a Bachelors and a Masters of Arts in Sociology from the University of New Orleans. After the competition of my Masters thesis in May 2010 entitled, Everyday Lived Experiences and the Domain of the Sexual: as explored by four physically disabled women, I knew my next goal was the University of Illinois at Chicago (the University of Illinois at Chicago is the only university in the United States to offer a Ph.D. in Disability Studies).
Throughout the pursuit of my career I have always worked closely with the state of Louisiana to ensure that my career goals met the state’s criteria for providing ongoing personal attendant services. Attending the University of Illinois at Chicago (UIC) was a part of my Comprehensive Plan of Care (CPOC). My staff helped me through the application process that I worked tirelessly to complete. When I was accepted into UIC I was ecstatic. I quickly informed all parties that I would be starting the program August 27, 2012. I was granted a research assistantship that included a tuition wavier and a monthly stipend that would help pay for housing. I located and obtained housing, and my two primary personal care attendants agreed to help me get settled by coming out to Chicago and care for me for a month each. They both wrote signed letters to my provider agency, and made living arrangements with friends in Chicago.
It never occurred to me that the state would deny my request to study out of state because:
1. UIC was my #1 goal in my CPOC for over a year.
2. I did not plan on becoming an Illinois resident.
3. I would remain a Louisiana resident and be in state for more than a 1/3 of the year.
4. I plan on returning to Louisiana to practice my profession.
I was wrong. Not only did the state deny my request, but I was forced to give up my research assistantship and my tuition waiver. I also had to defer my acceptance until August 2013. What makes this additionally disturbing is that as long as I forgo school, remain home and give up on my goals and dreams I will fully be allowed to keep and maintain the services I receive. This is a decision made by the state, knowing they have the flexibility to support my goals but choose not to. What does this say to individuals with disabilities, that we support your educational goals as long as you aim low? This is the wrong message and wrong policy to support.
The state of Louisiana is effectively denying me the ability to pursue a vocational goal which they have supported by granting me the personal care attendant services needed to attend school in order to obtain a higher education, essentially negating the investment they have made in my education and career for the last decade. Section 504 of the Rehabilitation Act states:
No otherwise qualified individual with a disability in the United States… shall, solely by reason of her or his disability, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance. (Section 504 of the Rehabilitation Act of 1973, as amended 29 U.S.C. ยง 794)
After a lifetime of hard work, the one thing that I wanted more than anything was taken away from me. I quickly appealed this through an administrative law judge with the help of Laurie Peller. However, that request was denied as well. Therefore, I was forced to defer my acceptance. I would like this decision to be reconsidered.
Even if I were to get services through the state of Illinois, they do not provide the level of care that I require, and it would take a year to become an Illinois resident which is a requirement for eligibility for their personal care attendant program. Also, if I were to become an Illinois resident, I would lose Louisiana residency, access to services that require long waiting lists to receive with no guarantees of becoming eligible upon return. I do not want to do this as I want to help out my Louisiana community upon completion, to grow, work and retire with all my friends and family reside in Louisiana.
It is my hope that that there will be a reversal of decision by lawmakers and my 504 rights will be restored so I can pursue my career goals. No one should be forced to choose between education and continuity of healthcare.
All photos used with permission from the author