As I get ready to continue my college education, I realize that there is a severe lack of policies in place to address critical challenges in finding personal supports for students like myself at the university level. Because I am severely limited by my mobility, visual, and physical impairments, I must rely on people to accompany me to school, during class, and back home. If no one is around to help, I cannot go to school. It’s that simple. Disabled students like myself face multiple challenges in their educational journey, primarily with equal access. While in public school, we have the IDEA (Individuals with Disabilities Education Act) which is written as Part B of Section 504 of the Rehabilitation Act of 1973. This allowed for people like myself to receive all the supports I needed while in the public school system, so that I could access a Free Appropriate Public Education. This law made sure that I had everything I needed to access my education, including a Direct Support Person (DSP) / Personal Care Attendant (PCA) to attend classes with me and help me access the school physically. But once I graduated from high school, this law no longer applied to me.
Students with disabilities in recent years are the most likely group to be marginalized and excluded from higher education. Living with Riboflavin Transporter Deficiency (RTD) has forced me and my family to fight for many things educationally, most recently, in the form of needing to create and find resources with little to no help when it comes to attending a post-secondary institution. Now that I’m enrolled in UMBC and still struggling to find a DSP/PCA, I realize how desperate the need is for colleges and universities to offer direct support services for students with documented moderate to severe disabilities who need them to attend college.
As a Social Work major/Political Science minor, part of my mission is to advocate for changes in the law that would require DSPs / PCAs at the college level. The proposed change would be an addition to RISE Act, which clarifies documentations used in context of higher education to show proof that a student has a disability. Right now, most colleges don’t offer these services and there are currently few resources that would help me find and hire such a person. For the past four years, it has been entirely up to myself and my parents to locate, interview and employ someone to attend college with me; an additional burden that my college peers are not subject to. The lack of support person, in my case and others like me, is a barrier to education and something that I believe needs to be changed.
The RISE Act should require that all schools review the documentation of a student’s need for specific accommodations and agree to assign a direct support professional to meet a student’s course schedule without being left alone on campus. Registered nurses and home health aides should be made available to those in need of constant medical supervision. If a student plans to live on campus and actively participate in programs of study and student organizations, it should be the college’s responsibility to ensure he/she not only has adequate access to direct care but also someone to provide personal safety for those who need it.
In public school, I was able to enjoy many extracurricular activities and network with my peers, especially with a fair amount of help needed from a DSP/PCA. I was happy with the benefit under IDEA that enabled me to receive mainstream education, even though my parents had to fight very hard on my behalf. Unfortunately, as a college student I have very limited availability of support to be on campus all day and it interferes with my ability to do anything social, which is a significant part of the college experience.
The policy changes I will be working toward will include the following:
Grant funding to university student disability service programs for employee training and recruitment.
Contracts signed by a student each semester to demonstrate that he/she agrees to receive DSP services.
Assurance by the college that a student receives a certain number of hours of personal support during regular class schedule and for extracurricular activities.
I am confident that such changes would be life changing and improve the lives of students who have unique disabilities along with the capacity to manage direct care in continuing education and beyond. Equal access to education should not stop when a person graduates from high school. We need to begin making post-secondary education a priority and go through the process of creating a system where students with disabilities should not have the additional burden of locating and hiring on-campus support to access their educational standards. Hiring a good support worker is an emotional roller coaster which I am aware of because I understand how frustrating it has been for me and my family when there is a shortage of resources for recruiting direct support professionals. The proposed policy changes would break down the barriers by improving access to higher education with more direct support provided at a university level. My greatest wish is to be a regular person like my able-bodied brother who is now a freshman at American University and a full-term student. If I could receive reliable and guaranteed DSP/PCA support, I’d feel better about my educational experiences and less like an outsider.
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