Independence is fundamental to the college experience. For most, leaving home for the first time and navigating the newfound freedoms of university life is an exciting challenge — something students dream of from their restrictive high school classrooms — and the prospect of crafting a whole new version of oneself in these unscripted circumstances is daunting, but also thrilling. For students with disabilities, however, this independence comes at an incredible cost.
As a full-time electric wheelchair user who requires physical support with all aspects of daily life, I rely on a team of personal care attendants (PCAs) who provide 24/7 care and enable me to participate in all facets of university life. At a cost per year of more than four times our undergraduate tuition, these PCAs assist me with all aspects of personal care (washing, dressing, transferring in and out of my wheelchair) and remain on standby day and night to keep me comfortable, safe and ready to make the most of my college experience. I am lucky that, as an international student, funding for this vital care continues to be provided by the health authorities in my home country while I remain in education across the Atlantic. But from this position of immense privilege, it has become clear that not all people with disabilities live within a system that enables them to enjoy equal access to education, employment and independent living.
In addition to the stresses of the college admissions process, many disabled students are faced with the task of figuring out exactly how they will have their personal needs met when attending school away from home. In U.S. legislation, these needs fall into two distinct categories: academic accommodations and personal services. For the former, colleges are required by law to offer certain accommodations to ensure that disabled students can access their education in an equitable manner. At Stanford, these services are provided by the Office of Accessible Education (OAE). Common OAE accommodations include reduced course loads, assignment extensions and extra time on exams, but also include any housing modifications necessary to accommodate a student’s disability, such as a first-floor room or an extra bed space for a PCA. Despite variations in the student experience, there is a well-defined process for requesting such accommodations, and the University is duty-bound to meet needs as assessed by the OAE.
Personal services, such as PCA services, are therefore accommodations that fall outside of the scope of the University’s legal obligations. According to the U.S. Department of Education, personal services are defined as help with “bathing, dressing or other personal care,” and it is specified that institutions are not required to provide services “for personal use or for help during individual study time.” Consequently, there is currently not a single U.S. university that offers financial support for caregiving services and very few that have designated resources to financially meet other, outside-of-the-classroom disability needs. This means students are forced to turn down college offers in favor of options closer to home, rely on family members to attend by their side or look to crowdfunding as a means of finding, in some cases, in excess of $4,000 per week to finance their independence.
In California, those who qualify for Medi-Cal due to their disability are eligible to receive financial support for community living through In-Home Support Services (IHSS), a state-wide program intended to keep individuals living with disabilities out of institutionalized settings by ensuring the provision of non-medical care within their own homes. This is a first point of call for many seeking independent living or to alleviate pressure on primary caregivers. But many who access this service report being allocated insufficient hours of care to actually live independently and a rate of pay for caregivers that is too low to retain a reliable team in areas where the cost of living is already so high. All this means that, in most cases, the disabled individual and their family must make significant financial contributions towards care for independent living, which many simply cannot afford.
Writing this article amidst Antonio Milane’s call for Stanford to address the entirety of his accessibility needs, I am heartened by the response his message has received from the student community and grateful for his courage in highlighting the systemic issues that underlie the distinction between academic accommodations and personal services. When it initially refused to provide a scribe for work outside the classroom — which has been deemed a “personal service” — Stanford may have technically been within its legal rights. So the question becomes the following: Whose responsibility is it to meet this need when students themselves cannot?
The most obvious answer is to place this duty on universities, many of which have the resources and capacity to support disabled students in this way. But I fear this is a “bandaid’ measure” that fails to address the real, systemic issue at play. Requiring universities to cover the immense financial burden of caregiving and other personal disability services would be a tremendous step toward leveling the playing field for students with disabilities in higher education, and all avenues should be explored to ensure that not one more student must turn down their educational future because of a disability. But I do not wish to see the movement end here.
Focusing too heavily on institutions of higher education and their obligations to disabled students privileges those who have chosen an academic pathway, and I do not believe that the option to live independently should be so intrinsically tied to achievement in traditional educational environments. Outside the Stanford bubble, people with disabilities everywhere are seeking ways and means to lead an independent life in a society that, so far, has not supported them in doing so. This not only negatively impacts educational trajectories but also significantly inhibits career progression and opportunities for meaningful social engagement in the community.
In recent weeks, Stanford has been thrust under a harsh spotlight that exposes the deep-rooted inequalities of a system that reaches beyond the perimeters of college campuses. In response, it is vital that the University simultaneously seeks means by which to meet the immediate needs of disabled students and prioritizes bold action to be a leader in this charge to highlight and address gaps in provision for people with disabilities aspiring to independent living. Colleges may be the starting point, but the movement cannot end until the entire disability community is empowered by the necessary governmental support to pursue the life of their choosing.
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