The College Search
Students with hydrocephalus share many of the same questions as their peers who are not living with a chronic medical condition when exploring colleges. These questions revolve around academics, campus culture, financial aid, and student services. We also have a unique set of considerations to take into account, including access to health care providers and, for some students, physical and programmatic accessibility and academic accommodations. Data indicates that approximately 19% of college students in the United States are students with disabilities (U.S. Department of Education, National Center for Education Statistics (2019)). This number includes learning disabilities, ADD, mental health conditions, chronic health conditions, and physical disabilities (Digest of Education Statistics, 2017 (2018-070)). Although colleges are required by federal law to accommodate students with medical conditions and disabilities, the types of accommodations that are offered, and the way in which accommodations are administered varies from college to college. For this reason, it is critical for students with health conditions and disabilities to understand and consider this when engaging in the college search process.
Many students get serious about the college search in their junior year of high school. However, much of the research and work can start well before then. There is a lot to consider when thinking about transitioning to college with hydrocephalus. Beyond the typical considerations around academic fit and cost, you will also need to think about your medical needs and what accommodations and support are available on campus.
Where to Start
Students should take some time to really get to know themselves as they approach the college search process. Can you answer these questions:
- What type of learner are you?
- What is challenging for you at school – either in or outside of the classroom? What is enjoyable?
- How does your hydrocephalus impact you on a daily basis? Not at all? A little? A lot?
- If it does impact you, how?
You have two groups of people who can provide you with valuable insights into your strengths and challenges as you take a self-inventory – your parents and your teachers. Ask them for their insights on where your strengths and challenges lie, what type of college they think would be a good fit for you, and what you need in and from a college and your professors to succeed. You don’t have to take all of their advice, but sometimes seeing yourself through someone else’s eyes – particularly people who care about you – can be helpful. Knowing yourself and what you need to not only be successful but also enjoy your college experience will go a long way in helping you choose the right school.
Most students start the process by considering their interests. Once you have determined what your interests are, that can lead you to determining a course of study or major and a school that offers that course of study. At the same time, it’s okay to not know where you want to focus academically yet. That’s also what college is for!
Students should also think about how you like to learn, such as
- the type of work you prefer – hands-on, group-based, or research?
- the way information is taught – lectures or discussion?
To find this information, you can look at the college’s website, read course descriptions, check out reviews of professors, and begin to determine if that college is the right academic fit. Students should also look at the average GPA and standardized test scores of the most recently accepted class. This will help you know if admission is achievable.
Campus Size and Location
Thinking about whether you want a small or large campus, looking at the average class size, an urban campus or rural campus, an open campus, or a self-contained campus, are all factors to think about. For example, some students with hydrocephalus experience challenges navigating large areas, which can be compounded by a lot of activity and noise. A large spread out campus or a campus integrated within a large busy city might not be the ideal environment for some who may do better on a smaller and/or self-contained campus.
Similar to campus size is class size. Students should think about their comfort in large lecture-style environments with over 50 or 100 students versus smaller class sizes of 24 students down to even 4 students.
Finally, it is important to know the proximity to the nearest medical institution that can provide emergency care for a young adult with hydrocephalus. A family should decide together their comfort level on how many hours or miles away the college is from a hospital with neurosurgical facilities.
Students should learn about the culture on campus. Many students use their personal interests, such as sports, arts, or politics to gauge whether a college will be a good fit for them. Try to visit the campus and speak with current students. You may also want to do a bit of online research to learn about the culture on campus. One great source of information is the student newspaper.
Finances are a concern for many families. Many colleges offer financial aid packages and scholarships that students may be eligible for. There are scholarships that are specifically available for students with disabilities, including specific scholarships for students with hydrocephalus, including our own scholarship program. Apps such as Scholly can help make navigating the many scholarships available a much easier task. Visit our College Scholarship section under Patient and Family Resources for more scholarship opportunities.
If you are receiving Social Security Income (SSI), there are laws and policies to be aware of that can benefit you as you attend school. For example, some schools, particularly community colleges, may have tuition assistance or waivers for students with disabilities on SSI. Ask the financial aid office for the school(s) you are interested in. Additionally, under SSI, a recipient under the age of twenty-two who is working and is regularly attending school qualifies for the Student Earned Income Exclusion (SEIE). Finally, for students working to achieve financial independence and end SSI disability eligibility through gaining full-time employment, there is a work incentive known as PASS, the Plan to Achieve Self-Support. For information on these programs and others, visit the Social Security Administration website.
Academic Support and other Accommodations
All colleges are required to provide “reasonable accommodations” under the Americans with Disability Act (ADA). While accommodations can support academics, they do not only apply to the classroom. Students may also need housing, dining, transportation, and recreational accommodations. Every college has a Disability Support Office (DSO), or an administrator who is tasked with overseeing the accommodation request process and facilitating accommodations.
When you are exploring colleges, you should get in touch with the DSO to discuss your needs and ask questions, particularly if you received supports under an Individualized Education Plan (IEP) or 504 in high school. Students should also look at the information that the DSO has on their website to review the office’s mission statement, the process for requesting accommodations, and to look for information that may be relevant to their needs, such as information on academic support, housing, transportation, and dining accommodations.
Most colleges offer some academic support to all students, such as a writing center and tutoring services for specific subject areas. Some colleges also offer academic support services where students can meet with a professional or attend workshops to discuss things like time management, study skills, college reading strategies, and test preparation. For examples of colleges that offer more defined support services or specialized programs for students with learning disabilities, read our article, College Programs for Academic and Accessibility Support.
Additional Types of Accommodations
There are a variety of reasons that a student may need housing accommodations. Some examples of housing accommodations include a single room, a private bathroom, an ADA-accessible room, and a lower floor. Some students with seizure disorders or mental health conditions may be allowed to have a service animal on campus, including living with them in campus housing. Students should consider their daily living needs and functional limitations to determine what type of housing accommodations they may need in the residence halls.
IMPORTANT NOTE: Students should start the process to request housing accommodations as soon as they commit to the school. Typically, there are deadlines to request housing accommodations in May or June, depending on the college. Housing accommodations are granted based on medical need and availability.
Personal Care Attendants: Students who need support with daily living (bathing, toileting, medical assistance, etc) may have to hire a Personal Care Attendant (PCA). Colleges generally do not provide PCAs as an accommodation. Under Title II of the ADA, a PCA is considered an “auxiliary aid and service”. However, allowing the PCA to live with the student, or giving the PCA access to the student’s room is an accommodation. Each college has its own policy around PCAs. Students will need to contact the DSO for more information.
Students may also need support learning how to communicate and manage working with their PCA. This guide: Making the Move to Manage Your Own Personal Assistance Services: A Toolkit for Youth With Disabilities Transitioning to Adulthood is a good resource for students to start thinking about their role in this process.
As of July 2021, there are only two colleges in the United States that have residential living programs that include PCAs. Those schools are:
If the student will need a PCA on campus, connect with the DSO to have a conversation about the process.
Students who have a medical need for a specific diet, food allergy, or who need assistance in the dining hall, can request dining accommodations. Typically, this process is coordinated through the DSO in conjunction with dining services. Some examples of accommodations may include gluten-free food for students with celiac disease and peanut-free food for students who have a nut allergy. Students with mobility impairments may need support with food selection and carrying a tray. Students with sensory impairments, such as a visual impairment may request a digital version of a menu. Whatever the dining need is, see how the school is currently accommodating these needs or are willing to work with you, if this is the school of your dreams. start the conversation with the DSO to follow the process to request accommodations.
Many colleges offer transportation both on and off campus. If the student needs accessible transportation for a wheelchair or mobility device, they should ask the DSO. Some colleges also offer transportation for students with mobility impairments between classroom buildings on campus. Usually, this information is advertised on the college’s transportation website, but if the student has questions, they can connect with the DSO.
Students with disabilities should have access to all of the amenities on campus that their non-disabled peers have. This includes campus recreation services and activities (including clubs and school-sponsored social activities). While the campus fitness center and student center are required to be ADA compliant, they may not be accessible to all students. Here are some examples of accommodations that students may request: Accessible changing area, pool chair lift, rearranging fitness center equipment to allow for access, adaptive fitness equipment, adaptive furniture, and adaptive gaming equipment.
Visiting Prospective Colleges
Visiting a campus is a very helpful part of the college search process, particularly if you will be requesting accommodations of any kind. You can hopefully see some in action as well as talk to tour guides and current students about the overall culture of inclusiveness and attitude of the administration.
Tours can help you get a feel for the campus and help you understand what it may look like to navigate the campus. It can also help you get a feel for the culture on campus and look at the surrounding area as well.
Setting up a tour
Most colleges have a calendar on the admissions website where students can register for a tour. Many tours can take up to 2 hours, and require a lot of walking. If you need accommodations for the tour (wheelchair, mobility device, breaks, etc.), be sure to contact the admissions department and request the accommodation prior to the tour.
Disability Support Office
Accommodations vary from college to college. It’s a good idea to make an appointment to meet with the DSO when visiting campus. This way, the student can ask questions about the accommodation process, learn about the types of accommodations that the college offers, and get a sense of the scope of the disability support office at that college.
Information you can trust! This article was produced by the Hydrocephalus Association, copyright 2021, in collaboration with Annie Tulkin, MS, of Accessible College.