THIS IS FOR YOU
This guide is for you if you are a high school or college student who has had brain cancer or traumatic brain injury. The purpose is to help you navigate the college admissions process, consider criteria in making your college selection and to become aware of resources available to you, so you can thrive once you get to college.
This guide is also for parents and counselors of these students.
Pediatric Brain Tumors
Pediatric brain tumors are the most common form of solid tumor. Approximately 5,000 cases are diagnosed per year among children and adolescents. About 28,000 kids in the United States are fighting brain tumors at any given time. Brain tumors are the second most common cancer among children 0-14. Brain and Central Nervous System (CNS) tumors are the third most common cancer among adolescents and young adults (ages 15-39). (abta.org) The tumors and common treatments of chemotherapy and radiation can cause neurological and intellectual impairment in learning, spatial information and memory lapses.
Pediatric cancer and treatment often leave students with chronic conditions or disabilities, in particular, cognitive processing disorders. Therefore, cancer survivors often have long-term learning disabilities, as well as other chronic and long-term conditions related to the disease and treatment. Also, many cancer survivors have sustained damage to the fragile pituitary gland, either through tumor positioning or radiation treatment. The pituitary gland is the body’s master gland governing hormones. The posterior pituitary gland stores and releases hormones from the brain’s hypothalamus and the anterior pituitary is glandular and produces its own hormones. Therefore, it’s common for pediatric brain tumor patients to have endocrine medical issues relating to hormone production. The age of onset, the position of the tumor(s), size, type and treatment all affect how the student is affected. Common problems include cognition (processing and problem-solving slowed due to rerouting information), memory, sleep, attention, concentration, fatigue and more. The good news is that youth are remarkably resilient, and their developing brains adapt, creating new neural pathways and connections.
Whether or not the cognitive impact is deemed “long-term” may affect whether you need to re-do neurodiagnostic testing to re-establish accommodations as you apply to college and later graduate school and for standardized test accommodations. Whether or not a condition is deemed “long-term” is not just semantics; it has ramifications. However, once you have established accommodations in college, these generally roll over from year to year within that institution. Neurodiagnostic testing can be very expensive (roughly running $3,000 to $8,000 or more), generally is not covered by insurance, and can be time-consuming, spanning multiple sessions that take many hours at a time. Certainly, there are different types of testing that are less extensive and less expensive. However, if you are still at a children’s hospital or have access to a neurodiagnostic testing professional through your public school system, these may be less expensive approaches to getting some testing done to establish the need for cognitive processing disorder accommodations. There are sometimes long waiting lists to get neurodiagnostic testing through a hospital, so you may want to get on the list early.
A Disability with Legal Protection
Having had cancer is a disability, as defined by The Americans with Disabilities Act of 1990 (ADA). In 2009, the courts held that this includes people whose cancer is in remission. The ADA and Section 504 of the Rehabilitation Act of 1973 mandate that both public and private colleges provide equal access to students with disabilities. Often, students will hear of a “504 Plan” which refers to accommodations required by this federal mandate.
The Office for Civil Rights, Department of Education ensures equal educational access. This link includes a form to complete if you would like to file a formal complaint. However, it’s a good idea to first bring the problems to the attention of your disabilities support center and professors, so hopefully they can quickly remedy the problem.
Tumors fall within the category of non-traumatic Acquired Brain Injury or ABI. Non-traumatic refers to not being the result of external physical force, such as a blow to the head, for example. This distinction is worthwhile being aware of because it affects how your disability is categorized vs. a learning disability, or more precisely, you may have a learning disability due to ABI.
Disability Is Common on College Campuses
According to the National Center for College Students with Disabilities NCCDS quick facts, students with disabilities comprise 19% of the undergraduate student population.¹
Students who have had pediatric brain cancer are often considered within the Learning Disabilities category (31% of students with disabilities), ADHD category (18%) and Chronic/Health category (11%).²
Sources: ¹U.S. Department of Education, National Center for Education Statistics. (2019). Digest of Education Statistics, 2017 (2018-070).
²Raue, K., and Lewis, L. (2011). Students With Disabilities at Degree-Granting Postsecondary Institutions(NCES 2011–018). U.S. Department of Education, National Center for Education Statistics. Washington, DC: U.S. Government Printing Office.
A ROADMAP TO RESOURCES
This guide spans the admissions process and the college experience, from identifying colleges where students would likely thrive in an atmosphere of support to understanding how these resources are deployed, sometimes in the form of accommodations.
Navigating the college admissions process includes existing resources and blazing your own trail. Consider yourself an advocate for yourself and identify a counselor at college who can also serve as an advocate for you. Remember that you know best what works for you.
A RANGE OF RESOURCES
Here are some types of college resources for students with disabilities related to brain cancer:
o Special Programs – Some schools have special programs that may come with an additional fee or may be free, but you have to enter, for example, the summer before freshman year, to be part of this special cohort. These students benefit from prep summer sessions, opportunities to socialize together and share experiences, and personalized support with counselors and tutors who know them and know their issues, available year-round for a consistent experience and support system.
o Accessibility Center – Staffed with specialized counselors and a learning center for taking proctored exams. These centers have a variety of different names depending on the university. For example, at the University of Michigan, Ann Arbor, the center is SSD, Services for Students with Disabilities.
o Possible Accommodations – Adjusting or modifying exams or assignments and deadlines, e.g., reduced workload, allowing for extra time; note-taking; early registration, assistive technology; taking proctored exams in a learning or testing center; additional breaks for eating/restroom and eating/drinking beverages during class.
o Tutoring –May be available with/without cost depending on the extent of the support services and how this is structured. For example, dormitory living or campus resources may include a study room with drop-in tutoring by student tutors who are learning assistants, upperclassmen who did well in a particular course. However, the expertise of tutoring varies, and many students do not avail themselves of this opportunity for academic help. There are also clubs that offer free tutoring, for example the premed club offering tutoring for introductory science courses.
o Support Groups –Meet students with similar issues and learn how to best navigate the system and gain peer support. These support groups or communities may be on-campus and organized by the college or off campus.
o Professor/Teaching Assistant – Get to know professors and teaching assistants. Be sure they are aware you have accommodations. You are not required to divulge the nature of your medical issues, as this is protected information. However, if you want to share how they can help you be successful from the beginning, this makes them aware about possible needs on their part to modify or adjust assignments or testing. Professors need this lead time to adjust their testing and assignments, as it may require time on their part. They should be apprised of accommodations by the accessibility center, but it’s better to reach out to them to be sure they are aware of accommodations, in case they did not open their notification letter or were only notified at exam time.
The National Center for College Students with Learning Disabilities is the only federally funded center in the U.S. with information relating to all types of disabilities. However, there are resources, tips and news relating to a range of disabilities, so it’s worth perusing. It recommends ways to maximize your accommodations, so it provides good awareness of the role the student plays in making this happen.
The Strategic Alternatives Learning Techniques Center at University of Arizona has assembled a useful list of student and community resources. It is definitely worth reviewing this list for organizations that provide support. This list includes resources for students, parents and professional resources for educators, such as AHEAD, the Association on Higher Education and Disability. If you have the time, AHEAD offers relevant articles, such as alternatives to note-taking, but it also requires membership for access to this content.
The Affordable Colleges Online website was written from the perspective of a student with cancer.
Cancercare.org provides counseling, support groups, education and financial assistance, free of charge. You can specifically choose resources for brain cancer support using the filters on the website. Cancer generally requires ongoing care for several years to come if not the rest of your life and cancercare.org provides case management to help you navigate ongoing care.
The American Brain Tumor Association, abta.org, is America’s original nonprofit dedicated to education, support and research.
Founded in 1998, the Brain Tumor Foundation, braintumorfoundation.org/, was founded to treat the whole person, socially, financially and emotionally.
INTERESTING COLLEGES AND PROGRAMS THAT PROVIDE SUPPORT
Your college selection criteria may or may not have anything to do with being a cancer survivor. But it’s worth taking a look at the types of support available to you. These colleges represent a spectrum of services. You may want to choose a college like Landmark, that is exclusively dedicated to students with learning disabilities. Or you may thrive at a traditional college with support services for students who learn differently. Your choice of traditional or specialized for LDs may depend on the extent of your learning challenges.
Remember, one type of college is not inherently better than the other. The best college is one that is the best fit for you. Since you can’t try them all, here are a few standout programs that demonstrate different types of support. Remember to take (virtual) campus tours and sign up for (virtual) information sessions to learn more. The information sessions that include current students are excellent for getting a feel for campus life.
A SPECIALIZED COLLEGE
Landmark College, located in Putney, Vermont, is intensely focused on helping students who learn differently. It is exclusively dedicated to students with learning disabilities. Individual class sizes are small and the college offers a range of academic support services for students because of this particular focus. They promote themselves as a college for students with learning disabilities, with ADHD, dyslexia and ASD (Autism Spectrum Disorders) called out as common issues for students. Landmark has EF Coaches, or Executive Functioning Coaching, individualized to promote EF skills including organization, motivation, self-management and overall independence. EF can also be important in reading comprehension and extracting and retaining information.
PROGRAMS AT TRADITIONAL COLLEGES
There are many worthwhile programs at traditional colleges. In fact, since cancer survivors are classified as having a disability, all colleges are required to make accommodations. The extent and nature of those accommodations varies. Some programs are quite expensive and some support services are free, covered by tuition. Here are a few programs that represent different approaches:
University of North Carolina at Chapel Hill
The Learning Center at UNC has excellent resources for students with ADHD. Brain cancer survivors often have ADD symptoms, so these resources could also be appropriate for survivors of brain cancer. The learning center hosts study groups and coaching sessions. The college offers an array of options, including the accessibility center, course substitutions, advising, study spaces, peer tutoring and more.
University of Connecticut
Costs for the Beyond Access program vary for the programs depending on usage, from one time per week to three meetings per week, from $1,800 to $3,600 per semester (prices subject to change). This program is interesting because it includes mention of building skills around memory and concentration, which are typical post-cancer treatment issues.
Hofstra College in New York
Hofstra is Long Island’s largest private university. The Program for Academic Learning Skills (PALS) has been in existence for over 30 years, showing Hofstra’s commitment to this student population, while students being integrated into a mainstream campus. Every student is paired with a learning specialist from freshman year to graduation, and the program for that student is tailored to the student’s needs. There is a one-time program fee for the program, $14,050 (prices may change).
For PALS consideration, students must submit comprehensive documentation of their specific disability to Student Access Services. Documentation requirements can be found at hofstra.edu/pals. Documentation must be in the form of a current (within two years of application to Hofstra) psychoeducational evaluation.
For an additional fee, Adelphi College, also on Long Island in New York, offers a support net: the Learning Resources Center ($4,730 per semester plus tuition, price subject to change). Through the Learning Resources Center, students have assigned academic advisors, tutors and priority registration. Adelphi has strong programs in: Business Administration and Management, Nursing, Social Work, and Health and Physical Education.
University of California
UC campuses vary in the name of their accessibility center, for example, the UCLA Center for Accessible Education. Regardless of what they are called, UCs have these centers. For the UC system, students should heed the advice that there is no coddling. This is consistent with a public university. As a new student, it behooves you to register with the center right away as the process for determining if you can be established as a student requiring services from the center takes time. You may find that your counselor helps you the most when you first get to college, as you learn to navigate the system.
Once you have registered at the accessibility center and are a returning student, at the beginning of each quarter, you should request that an accommodations letter is sent to each of your instructors for that quarter/semester. This is done by logging into the center’s portal and selecting the button, “Send accommodations letter to instructor.” This is a bit of a misnomer, as what is sent is an email to the instructor that an accommodations letter is waiting for them in a secure faculty portal. That letter only includes class and testing accommodations. The letter is not actually sent to the instructor, so if the instructor never accesses it in their faculty portal, they may not be aware of needed accommodations, such as modifying an exam. Therefore, it’s a good idea to close the loop with your professor to confirm that he or she is aware of accommodations and revisit this topic; don’t assume your professor will remember to create accommodations based on one conversation. On a related note, UCLA offers a disabilities studies program, so it is particularly forward-thinking in disabilities inclusion.
University of Arizona
University of Arizona, located in Tucson, offers the SALT Center, Strategic Alternative Learning Techniques Center, providing support for students with learning and attention differences. Accommodations may include note-takers and weekly tutoring. Like other centers, it provides a place where students can go to focus and get a handle on their academics. During the pandemic, the center itself is all online, but they are keeping the first-floor lounge open for students to have a quiet place to study by appointment, with social distancing.
Boston College has a special center, The Connors Family Learning Center (CFLC), dedicated to students with learning disabilities and ADHD. There is a different center for students with other disabilities. The CFLC offers tutoring, writing support and a testing location. It publishes a formalized grievance process, which is useful because when students don’t receive their accommodations, they often do not know what recourse they have.
Additional citation for this section: petersons.com: 20 Great Colleges for Students with Learning Disabilities
CONGRATULATIONS, YOU’VE SELECTED YOUR COLLEGE! NOW WHAT?
Right away, reach out to the center that provides support for accessible education at your university and find out what the requirements are to register. The next step is to compile the documentation that you will need. To establish with the university that you are a student with a disability, you will complete a form and submit a letter from a medical professional along with other pertinent information. It is helpful if you have an idea which accommodations you would like to request. If you had a “504 Plan” or an IEP (Independent Education Plan), this will help establish that you have a disability and appropriate accommodations, so you may want or need to provide that paperwork, although that does not guarantee future accommodations. It supports your registration request with the center for accessible education.
Once you are registered, find out who your assigned counselor is. As soon as possible, make an appointment with your counselor, as that person will provide guidance about resources on campus. He or she may suggest accommodations that you hadn’t even considered because you weren’t aware of them.
Even though you may be assigned a counselor and have support resources available, make no mistake about it, you must be your own advocate. The college resources are there for you to tap into, but they probably won’t reach out to you. This means that you must initiate talking to your professors and Teaching Assistants, reserve time in the resource center to take your exams, and confirm any other details necessary to provide you with accommodations. For example, when you get your syllabus, look at the test dates and reserve those dates in the center if that’s where you ideally take your test due to having extra time or other accommodations. If you try to do this last minute, it won’t happen because proctoring has to be arranged and test-taking spots can get booked. UCLA, for example, requires that students must schedule exams at least two weeks in advance.
Both UCLA and Boston College use a software program, ClockWork for scheduling proctored exams at the test-taking center. For example, here’s more information about ClockWork on Boston College’s website. This page also outlines the accommodations process followed at many traditional universities.
During the pandemic, many accessibility centers are supporting students virtually only, so services such as face-to-face tutoring and in-person meetings between students and their accessibility center counselors are not happening. For example, UCLA has told students that they need to schedule all their tests with their professors to get their extra time, as there is no separate testing room for students to use and no one to proctor in person.
HOW TO SET YOURSELF UP FOR SUCCESS AT COLLEGE
Know Your Options
When students and parents are aware of their options, it empowers them with the knowledge of knowing what to ask for. If they don’t know what support resources may be available, they may never ask for them, so this knowledge alone becomes a source of advocacy. If your college offers a special program for students with disabilities, you need to apply to that program.
Investigate the Range of Services
Find out what support services and programs are available to you. There may also be clubs that provide support, which are unrelated to the student accessibility support center.
Investigate Out-of-Pocket Expenses Using Student Health Medical Insurance
Consider the medical services available to you, since you may have significant ongoing medical costs for testing, medication and doctor visits. Especially if you will not be using your parents’ medical insurance, this is very important. The level of health insurance varies greatly from college to college, from excellent to meager. If this is a concern for you that will hit your yearly budget, consider it an assignment to find out about student health insurance since this cost may enter into your college selection criteria. Usually you can find this information online, or there is a college administrator who is the liaison for medical insurance, so you can find out more about referrals to doctors or outside student health or for referrals for diagnoses, deductibles, out-of-pocket maximums, coinsurance (for example, the cost of an MRI). If you need an MRI every six months, you may need to budget for that, along with prescription medication copays.
Note that generally, you pay a fee for student health services. Some students choose to waive that fee and their student health insurance. While student health generally requires a referral for services outside student health, once you figure out how this works, it can be extremely valuable to you. Consider carefully—and be sure you are covered under excellent insurance through your parents–before waiving student health insurance. This includes reviewing copays or co-insurance for MRIs which may be part of regular medical checkups for you.
Be an Advocate for Yourself
Even if your classroom and test-taking accommodations are listed in a letter to your instructors, you cannot assume that this takes care of everything and that the professor is keeping track of what he or she needs to do for your accommodations. Ask for what you need, even if it’s listed in your accommodations. You should touch base with your professor and discuss accommodations without discussing personal and confidential medical information. It’s a good idea to do this regularly, at the beginning and at least two weeks before exam time. To quote the Boston College website description of special services for students who are already registered with the Boston College Connors Family Learning Center, “Students are best served when they self-advocate and use the letters (Professor Notification Letters) to facilitate an ongoing communication with their professors.”
Use Assistive Technology and Memory Aids
A smartphone and apps can help with organization and memory. Software programs generally offer assistive technology as well; for example, speech-to-text software, captioning and timers for executive functioning challenges. For memory, there are a slew of helpful tips for helping you remember learned information—storing and recalling information. Here are memory tips from Edgewood College.
If you need repetition or deep learning by attaching meaning in order to memorize, be aware of this and do what you need to do in order to make yourself successful. You may not be a student who can “cram” and leave memorization to the evening before a final exam.
Establishing Access to Disability Services
Some programs request neurodiagnostic testing results to have a basis for granting accommodations at the university level. Sometimes it is enough to have a form signed by your doctor with support from 504 accommodation documentation from high school, or an Individualized Education Plan (IEP). However, having an IEP or accommodations in high school does not mean that you automatically will be granted those exact same accommodations at the university level.
This is because accommodations and services are on a case-by-case basis. They are dependent on both the student’s disability while in college, which may be different from the level of disability in high school as the student recovers and compensates, as well as may be related to the course. However, generally a student with ABI has the same accommodations from course to course. Also, once accommodations are established at a college, they often roll over from freshman year through to graduation. Lastly, all colleges are not alike in accommodations; an accommodation that was approved at one college, where their programs may differ, may not be the same as at another university.
Here’s an example from Hofstra University of the type of testing that may be requested to establish entrance to an accessibility program.
|“Aptitude: The Wechsler Adult Intelligence Scale IV (WAIS-IV) with subtest scores is the preferred instrument. The Woodcock-Johnson Psychoeducational Battery III: Tests of Cognitive Ability and the Stanford-Binet Intelligence Scale IV are acceptable. Achievement: Assessment of comprehensive academic achievement in the areas of reading (decoding and comprehension), mathematics (calculation and problem solving), oral language, and written expression (spelling, punctuation, capitalization, writing samples) is required. The Woodcock-Johnson Psychoeducational Battery III: Tests of Cognitive Ability is the preferred instrument. The Scholastic Abilities Test for Adults (SATA) and the Stanford Test of Academic Skills (TASK) are acceptable.” Source: Hofstra Program for Academic Learning Skills (PALS)|
Stress Is Real
Consider wisely the level of stress that you can handle. The last thing you need is stress negatively impacting your health. If stress is debilitating to you, then you may need to take fewer classes in a quarter or semester, and take a class or two over summer. College isn’t a race, it’s an experience.
Yes, you can study abroad! You may have valid concerns about studying abroad, so let’s address them.
Will you get accommodations abroad?
Maybe. It’s quite likely that you will not get accommodations. Since study abroad programs are ancillary, the organizers may have their hands full handling regular curricular requirements, so getting accommodations may not be as organized. You’ll have to bird dog getting accommodations, but it’s hard enough navigating a foreign university, let alone figuring out how to get accommodations.
Prescription Medication Abroad
You definitely should arrange ahead to get enough medication to cover your stay abroad plus additional time This means communicating with your prescribing doctors and your insurance company well ahead of time. If it’s not too expensive, you may consider paying the additional months of medication out of pocket, since navigating this issue with insurance companies is slow. Start three months ahead even though there’s no logical reason it should take that long, but it does sometimes. Student health insurance is accustomed to study abroad issues and should have a way for you to get medication ahead. Also, you’ll want to purchase the medical insurance for studying abroad that your program offers, so you have coverage there, in addition to any international coverage offered by your regular medical insurance carrier.
When you travel, you will need a travel letter from your physician stating that you need to carry your medication, particularly any needles for injections. Medication should be carried with you while traveling, so it’s not lost, should your baggage get lost. Medication should be carried in the original prescription bottles. Of course, check with the FAA, the airlines and the arrival country for regulations as there may be a limit to the amount of medication you can travel with for personal use. Bring enough medicine to last you at least a week extra, ideally longer, so that if you decide that you’d like to extend your time abroad, your medication needs aren’t holding you back from intentionally or unintentionally delaying your stay overseas. Imagine if you were overseas when the pandemic travel restrictions were going into effect. That extra medication would give you peace of mind that you had time to figure out the change in travel plans.
Starting college is exciting. There are bound to be a few hiccups, but you are resourceful and can draw on a vast array of resources, including your new college community. You can do it!