How to Secure Housing and Manage PCA Services at College

This article was originally published on March 30, 2022 in New Mobility.

You have signed that dotted line and chosen the college you will attend! What do you do now?  

Once you have committed, there are a few steps that you need to take to ensure a successful and enjoyable college experience. The first critical piece is to secure appropriate housing. Most colleges have a housing accommodation process where students who need a specific type of housing due to a disability request housing accommodations. Deadlines to request housing accommodations vary from college to college, with some as early as May and others as late as July.  

You usually have to complete a form and provide documentation from a health care provider to support your accommodation request. You can connect with your school’s Disability Support Office and housing department to discuss your needs. You should start these conversations before committing so that you have a sense of the accommodations the college can offer and the process and deadline by which you need to request them. You can also ask to see an accessible dorm room or ask for a virtual tour if possible. 

As a wheelchair user, you may want to request specific housing accommodations such as an ADA compliant room, a centralized location, a lower floor and, if needed, a place for a personal care attendant to reside. The “Navigating and Transitioning to College with Paralysis” guide from the Christopher & Dana Reeve Foundation offers detailed advice on the various housing accommodations that you can typically request. 

“I lived on campus in a wheelchair-accessible dorm. I had to consider a lot of different factors for housing, such as would I be able to live alone or would I have to live with a roommate? Would the bathroom be large enough for my power wheelchair and a caregiver helping me?” says Lauren Presutti, a wheelchair user with muscular dystrophy who graduated from Central Michigan University and Grand Valley State University. Presutti’s other considerations included shower access, emergency evacuation access and snow removal. 

Students should create a relationship with the DSO to discuss their concerns. “I loved having a strong relationship with my college’s disability office, not only because they truly understood what my accommodation needs were, but also because they were a part of my strong support system through college,” says Presutti. “They cheered me on, gave career advice, helped me overcome unexpected challenges, and were amazing listeners if I ever needed to vent about class stress.”  

Additionally, some colleges have a housing requirement dictating that students must live on campus for anywhere from one to four years. If you cannot live on campus due to care needs, you may request an exemption from housing, and you should contact the DSO to discuss this issue.  

Personal Attendant Concerns 

For students who use personal assistance, securing services is the next step in your college transition process.  The Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973 do not require colleges to provide PCA services as an accommodation If you had a one-on-one aide in high school or need support with personal care, think about how you’ll handle these needs when you’re in college.  

Currently, only two colleges provide residential PCA services for students with physical disabilities. Those colleges are the University of Illinois at Urbana-Champaign and Wright State in Dayton, Ohio. At other schools, students who need support will have to hire assistants or bring a family member or friend to provide PCA services. 

Funding a PCA 

Funding your PCA needs can be challenging, but there are a variety of programs that can help. State vocational rehabilitation programs may offer financial support for a PCA. To be eligible for voc rehab, you must have a physical, mental, emotional or learning disability that is a barrier to employment or accessing higher education. Voc rehab programs fund all applications on a case-by-case basis.  

Many states also have Home and Community Based Services waivers, sometimes called Medicaid waiver programs, which can be another avenue to secure funding for PCA services. “I qualified for community living supports through Medicaid, which was coordinated through my local community mental health system,” says Presutti. She explains that though her disability only affects her physically, she still qualified for services because of how Medicaid lumps different types of disabilities together. “Using the Medicaid system was extremely advantageous to me, and I would recommend checking out the options for Medicaid within your state because you will likely be able to find funding for caregivers if you need them,” she says.  

Additionally, you can use funds in an Able Account — a tax-advantaged savings account for individuals with disabilities and their families — toward PCA expenses. Able Accounts are less restrictive on using the funds than a typical 529 college savings account.  

You can also appeal the amount of financial aid your college offers based on disability-related expenses. Swift Student created a platform to support students making this type of financial aid appeal. You can also investigate condition-specific and college-specific scholarships. 

Finding a PCA 

There are a few models for finding PCAs, including looking within the student populations at your school. “I found my PCA through a local nursing school program. I’m able to fund that through a scholarship that I receive,” says Kate Solliday, a student at Arizona State University who had a stroke and lives with a spinal cord injury. 

You can also find student PCAs at occupational and physical therapy programs, schools of education, social work programs, pre-med or other related health fields. “Often, these students need to have hands-on experience working with people who have disabilities. It looks fantastic for their resumes, so they are usually eager to gain experience such as serving as a personal care attendant,” says Presutti. 

Presutti notes that using students as caregivers can require some extra planning. “You will have to work around their class schedules, and you may have to adjust your staff roster each semester depending on changing classes.” If you require an extensive amount of care, Presutti recommends looking into larger schools with a variety of health programs. That way, you’ll have a bigger pool of students to draw from.  

Kayvan Zahiri is a first-year student at the University of San Francisco who has spinal arteriovenous malformation. “I have a nurse that works with me and accompanies me to school. The funding is through California Children’s services MediCal,” he says. “When hiring someone as a PCA, it’s good to set up a meet and greet prior to making any decisions to see if it’s a good fit. Fortunately, I have worked with the same nurse for years, so I didn’t have to find a new person.” Before school started, they toured the campus together so they could both have a better idea of Zahiri’s support needs in the new environment.

You may also opt to hire a PCA through a home health care agency or hire someone directly by placing an ad on a job-search platform like Indeed.com. If you’re new to hiring directly, Alex Ghenis, a C6 quad who attended the University of California, Berkeley, provides a good primer on the process of hiring and managing PCAs. 

PCA Management 101 

If you’ve never had to hire and manage a PCA, the prospect can be daunting. There is a lot to consider, including logistical pieces like interviewing, scheduling and payment, and bigger-picture concerns like navigating issues of body autonomy and learning to be an employer.  

Fortunately, the U.S. Department of Labor created a toolkit to support students and families in thinking through the student’s needs. This toolkit offers practical information on independent living and how to search for and manage a PCA. Additionally, Accessible College has a project with the Christopher & Dana Reeve Foundation to provide free college transition support services. You can use these services for help navigating this process and identifying the options available to you.  

It’s important to note that there are no regulations on who students can select to bring to college as a PCA. The college may have a process and policy to allow the PCA to live on campus or enter the residence hall. The college may also allow the PCA access to campus amenities such as the fitness center, library and dining hall. You should coordinate your PCA needs with the DSO before starting school. 

“I knew that I was also going to need a caregiver to come into the dining room area with me so they could help me fill my tray with food and carry the food to the table,” says Presutti. “So it was important to me when touring campus to ask if I would be allowed to have a caregiver come into the dining room area with me without swiping a card upon their entry. Sometimes we think these things will be automatically accommodated, but it’s helpful to be clear about them up front, so there are no unexpected issues when you move to campus.”  

Take time to think through your needs holistically, writing out all of the areas where you may need support in a 24-hour cycle. You can use this information to support requests for funding a PCA and explaining their role. Additionally, this can help empower you to be able to better self-advocate and articulate your needs to the DSO.  

“My biggest advice for navigating these processes is to plan ahead. The last thing you want is to be scrambling to pull resources together at the last minute just before moving to college. Waiting until the last minute will be incredibly stressful for you and everyone involved,” says Presutti. “Especially if you need an extensive amount of caregiving help, you want to give yourself ample time to secure funding, set up interviews, and really make sure that you feel comfortable with your staff before you have them start working with you.” 

Don’t wait to start planning! Connect with Accessible College today for a free 30 minute consultation!