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An illustration of a graduation cap surrounded by brain waves and the phonemes that make up the word dyslexia.
( Lynn Tu)
In College, Dyslexic Students Often Have To Be Their Own Advocates. How Some Found A Path To Success
Even students who enter higher education with a known learning disability are unlikely to ask for help.
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Elvis Garcia Jr. was not on track to finish college. After the first few semesters at Los Angeles City College, Garcia had a 1.9 GPA. It wasn't for lack of effort.

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Audio Version: In College, Dyslexic Students Often Have To Be Their Own Advocates. How Some Found A Path To Success

"I felt like I was spending so much time studying and trying to see the results of me studying in my grades, but I wasn't seeing them," he said.

Garcia began to wonder whether there might be a reason beyond his control. He had heard teachers mention that if a student felt like they needed extra help, they could go to the Office of Special Services, the campus disability office. One day, he decided to go.

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A specialist gave him an assessment that suggested he had a learning disability. Later, he would be officially diagnosed with dyslexia and, later still, with attention deficit/hyperactivity disorder, or ADHD. (Studies suggest that between 18% and 42% of children with dyslexia also meet criteria for ADHD.)

But that initial assessment qualified him for special accommodations in college, including tutoring and extra time on tests. "Honestly, it was the best decision ever," Garcia said, referring to that first visit to the disability office.

After that, Garcia's grades went up. He finished his associate degree, in five-and-a-half years, with a 3.6 GPA and got accepted to California State Polytechnic University, Pomona. "It was one of my happiest moments," he said. Garcia is now on track to get his bachelor's degree by next year in food science and technology, and is applying to Ph.D. programs.

Estimates vary for how many people have dyslexia — somewhere between 5% and 20% of the U.S. population. But even students who enter higher education with a known learning disability are unlikely to ask for accommodations to help them with their coursework and, therefore, don't receive accommodations. They're also less likely to graduate than their peers without disabilities.

ABOUT THIS SERIES

A 'Hidden' Disability

A national, long-term survey of students found only about one-third of students who were receiving services for a disability in high school reported to their college or university that they had a disability. This may explain why California institutions of higher education report low percentages of students with disabilities relative to national estimates.

Students with reported disabilities make up some:

Results from the national survey and separate research point to a variety of reasons why students may not report a disability to their college or university, including not considering themselves disabled and not wanting to out themselves as having a disability.

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"I just feel like sometimes it is hard telling people that I have ADHD or dyslexia because you never know how they're gonna look at you," Garcia said.

Learning disabilities are sometimes considered "invisible" or "hidden" disabilities because they're not obvious to others. In the national survey, students with learning disabilities were much less likely to inform their college of their disability than students with visual impairment or multiple disabilities.

Research has also shown that many students with learning disabilities don't know they can get accommodations in college, or are intimidated by the process of applying and then having to inform their professors about their accommodations.

Martín Cohen-Velazquez did tell his professors at Pasadena Community College that he had dyslexia, but that was after years of slowly getting comfortable asking teachers for accommodations in high school. "It felt kind of like, demeaning," he said of those high school experiences.

"It was just like pointing out that I was different and it made me feel different, like I shouldn't be getting special treatment because … you can't see anything, you can't see any difference in me. … But as I got older, I realized this is me. After a while it felt empowering."

Still, when he got to college, Cohen-Velazquez initially questioned whether he should ask for accommodations. "It's like, you're 18, now you're deemed an adult so why would you need help?"

Disability Rights In Higher Education

Colleges can't discriminate against students with a disability, and do have to make accommodations for students they know to have disabilities. But they don't have the same legal obligations as K-12 schools to provide a "free appropriate public education."

Unlike in elementary or high school, where parents and teachers take charge of managing a student's special education, college students with disabilities largely have to advocate for themselves.

Disability Law In Education: The Basics
  • IDEA: Individuals with Disabilities Education Act, 1975

    • Guarantees a free appropriate public education in the least restrictive environment.
    • Covers children with disabilities from birth until high school graduation or age 21. 
    • Requires development of an individualized education plan (IEP) for certain disabled students, with input from school staff and parents, that identifies the specific services the student receives.
  • SECTION 504: Section 504 of the Rehabilitation Act, 1973

    • Provides civil rights protections for people with disabilities in programs that receive federal funding, including employment, social services, public K-12 schools and post-secondary schools whose students receive federal financial aid.
    • Requires postsecondary schools to provide educational auxiliary aids and services to students with a disability who need such aids to effectively participate. 
    • Guarantees disabled students an equal opportunity to participate in sports and other extracurricular activities.
  • ADA: Americans with Disabilities Act, 1990

    • Title II prohibits state and local governments, including public K-12 and postsecondary schools, from discriminating on the basis of disability.
    • Title III prohibits private colleges and universities from discriminating on the basis of disability. 
    • Requires postsecondary schools to provide educational auxiliary aids and services to disabled students to guarantee equal access.

Garcia gets the same assignments and exams as his fellow classmates at Cal Poly Pomona, and he's held to the same academic standards. But he gets extra time to finish tests.

He also takes exams at the campus disability resource center with a proctor. He also gets questions read out loud by a machine, a typical accommodation for students with dyslexia.

"That's super helpful," Garcia said. "When I hear something, it's more straightforward."

Gabriela Fontanesi, who recently graduated from the University of California, Davis, didn't get accommodations for her dyslexia; she's never been formally diagnosed. But she did get accommodations for chronic migraines, which she said also helped with her dyslexia. These included digital textbooks and a screen reading app that would read and voice text.

Fontanesi also got extra time on exams and could take exams in a quiet room alone so that she could read the questions to herself out loud. "I don't think I would have survived college without some of the accommodations," she said.

Common Higher Education Accommodations For Students With Learning Disabilities
    • Priority registration
    • Extra time to finish assignments and exams
    • Tutoring
    • Exam-taking at a special center with a test proctor
    • Text-to-speech aids (like screen readers)

Diagnoses Dilemmas

Some students fear that verifying their disability with their college will be a burden. The Association on Higher Education and Disability (AHEAD), made up of disability resource professionals, surveyed students across the country and found that many were confused about the process of providing proof of their disability to their college.

Some thought they'd have to spend money on a private assessment in order to get updated documentation. That's not necessarily true, said Elizabeth Hamblet, a disability resource specialist who's worked in the field since the late 1990s.

AHEAD sets general guidelines for colleges when it comes to evaluating a student's request for accommodations, including that they should not require "extensive diagnostic evidence" of a student's disability and should rely first on a student's own telling of their difficulties. But ultimately each college decides what kind of paperwork a student needs to present and how recent that documentation must be.

Students who had an Individualized Education Plan (IEP) or 504 plan in K-12 can often transfer that documentation to their college. But if a student didn't use special education services in high school or doesn't have up-to-date documentation, a college might require a more recent assessment of the student's disability.

The RISE Act, a bill introduced in summer 2021 by a bipartisan group of Congress members, would standardize the evidence required from students in order to provide accommodations in college. For one thing, it would require colleges and universities to accept a student's IEP or 504 Plan as proof of a disability in order to qualify for accommodations. The bill would also dedicate new funding to support college students with disabilities and boost data collection on those students and their educational outcomes.

The RISE Act has since been rolled into a larger mental health package, which is currently in the House Education and Labor Committee.

But the bill wouldn't have helped students like Garcia who, before college, had never been assessed for, or diagnosed with, a learning disability. Garcia said, looking back to high school, he felt like his teachers had simply written him off as a bad student, and his strict Catholic parents had been preoccupied at the time with the fact that Garcia had come out as gay. "There were a lot of arguments at home," he said.

A man in a dark green suit jacket and bowtie stands next to, and gesturing toward, a poster in a large conference room.
Elvis Garcia was invited this year to present his research at an event held by the Institute of Food Technologists in Chicago.
(Courtesy of Elvis Garcia)

If a public school doesn't assess a student for potential learning disabilities, getting an outside assessment can be expensive, ranging from $500 to $2,500, according to the Learning Disabilities Association of America. Some people report spending much more than that.

Most insurance, including Medi-Cal, which Garcia has, doesn't cover screening for learning disabilities. Although Garcia got an initial screening for learning disabilities at L.A. City College, he said he didn't get a formal diagnosis of dyslexia and ADHD until he transferred to Cal Poly Pomona.

There, thanks to a friend, he found out that he could apply to get reimbursed by the school for testing. He wishes that information was more widely available for others in his position. "It's not something that you could have found on the website or anything," he said of the reimbursement program. An LAist search of the CPP’s Disability Resource Center confirmed that the public-facing website (some parts are password-protected) does not mention insurance or reimbursement.

4:39
Elvis Garcia Jr.: Getting Tested Was 'The Best Decision Ever'

Some, but not all, California community colleges offer their students free assessments for learning disabilities, said Paul Feist, a spokesperson for the California Community Colleges Chancellor's Office. He said some schools that don't offer free assessments will refer students to a nearby community college that does.

But beyond this, Hamblet, the disability resources expert, said it's rare for colleges and universities to offer these assessments for free. Still, she said, students with disabilities or suspected disabilities should register with the school's disability office so they can be evaluated for accommodations.

Even without an assessment, Hamblet said many colleges offer resources for the general student population, like tutoring and writing centers, that can be very helpful for students with learning disabilities.

"Not to say that they don't have a disability, and they shouldn't go get evaluated," Hamblet said. "But it can be a long process, it can take a while, and it can be an expensive process, and it's not guaranteed to tell them that they have a disability. So no matter what the outcome is, [my] recommendation would be to utilize the supports that are available."

She also recommended that when considering a college, students look up what kind of disability documentation they require, information that's often available on the school's website.

If a student does want to get an evaluation, Hamblet recommended asking their school's disability resource office whether they keep a vetted list of private evaluators and whether any of them provide evaluations on a sliding scale, meaning you pay what you can afford.

Tips For Getting A Free Or Low-Cost Learning Disability Assessment
    • Check with your college disability center. (Don't know how to contact them? Try searching this database.) If they don't offer free or low-cost evaluations, ask whether they have a vetted list of providers and whether any of them offer evaluations on a sliding scale (meaning you pay what you can afford).
    • Check with your health insurance provider. Your policy may, or may not, cover an evaluation.
    • Contact the Learning Disabilities Association of California. They may be able to help you find a low or no-cost provider. 
    • Call 2-1-1, a call center designed to help people find local resources for health care, housing and other essential needs; or search their resource directory online.
    • Read about more options researched by Understood.org.

High Schools Are Supposed To Prepare Dyslexic Students For College. Many Don't

Some parents can afford tutoring for their children's college entrance exams and consultants who specialize in helping students with learning disabilities get ready for college and find a supportive campus.

But most rely on high school counselors and educators to prepare their children for life after high school.

Under the Individuals with Disabilities Education Act (IDEA), high schools have to provide what's known as "transition planning" to all students with disabilities. This planning helps students form and execute their post-high school goals, usually employment or higher education.

But Christina Kimm, a special education professor at California State University, Los Angeles, said high schools often lack the time to fit key elements of transition services, like teaching life skills and self-advocacy, into a student's day.

Also, special education teachers often get minimal training in how to work with students and their families on transitioning out of high school. Those who get more extensive training usually work in transition services for more severely disabled youth, Kimm said.

For students with mild to moderate learning disabilities, Kimm said transition services tend to be cursory. "It's more like a check-off, like this person will go to college, 'check.' That's about it," she said, though she added that some schools do more than others.

Wear Your Disability On Your Sleeve (Or Your Hat)

Carolyn Weirick, a Pasadena-based education consultant who specializes in college counseling for students with learning disabilities, said it's important for students with an IEP or 504 plan to gradually take a bigger role in their progress meetings, which also include parents and educators.

"Even if the first couple of years they're just sitting quietly, they should be there because it's helping them to recognize themselves and to be able to express whether the accommodations are working," said Weirick, who has three sons with ADHD, one of whom is also on the autism spectrum.

She said students with disabilities will likely have an easier time transitioning to college if they learn to advocate for themselves because higher education doesn't offer the same level of support as K-12 schools.

Being dyslexic, it's definitely one of my favorite parts of me. It's what has always given me the ability to be a little bit different and unique and authentic.
— Gabriela Fontanesi, 24

"I say to my kids, arrive on college campus with a hat on [that says] 'I have ADHD and I'm fine with it. I have my strengths. I have my challenges, and I need help.' Those kids succeed," she said.

Weirick recommended that college-bound students contact the disability services office at schools they're considering and, as soon as they decide on a school, get enrolled with that office (see the resource section below for a database of disability offices at colleges and universities around the country).

Fontanesi, the recent UC Davis graduate, said that by the time she got to college, she had figured out what she needed to do to be successful academically. This included asking lots of questions, and asking for professors' expectations.

A woman in shorts, a blue shirt and a wide brimmed hat sits in a field between rows of tall green plants.
Gabriela Fontanesi graduated from UC Davis with a BS in viticulture and enology. "I would totally recommend any neurodivergent person go into agriculture because they're plants and they don't give a fuck whether you're neurotypical."
(Courtesy of Gabriela Fontanesi)

"If there was a test, I'd be like, 'What chapters are going to be covered on this test? What kind of material in the chapters? Do you need to know all of the diagrams, as well?'" Fontanesi said.

She has also come to appreciate what she sees as the advantages of her dyslexic brain: for one thing, she's good at big-picture systems thinking, a common characteristic of people with dyslexia.

"I think that little bit of, like, detachment has always been something that I feel very happy and powerful about," Fontanesi said, "what I kind of really enjoy about my mind."

Fontanesi said she also appreciates being around other neurodivergent people. Garcia, the Cal Poly Pomona student, remembers the community he found at Los Angeles City College when he began visiting the campus disability center.

"Having a center just for students with disabilities, it's safer and you can, like, be more open about it," he said.

Garcia's advice for fellow students with learning disabilities: get involved in campus activities to find your passion and relieve some of the stress of academics. Also, he said, don't limit yourself. "Apply for scholarships, even if you don't think you're qualified,” he said, “because if you don't apply, you're the one who's saying no.”

Part 5: How Teachers Are Prepared

LAist reporters Julia Barajas, Mariana Dale, Robert Garrova, and Kyle Stokes, and engagement producer Adriana Pera, contributed to this story.

Resources

Learn More About Dyslexia
  • I want to know more about dyslexia ...

    • California Dyslexia Guidelines — Comprehensive guide from the California Department of Education to help educators and parents identify, assess and support students with dyslexia.
    • International Dyslexia Association — membership-based organization that hosts conferences and workshops, and publishes self-assessments and fact sheets on everything from the neuroscience of dyslexia to how to apply for accommodations on college entrance exams. It also publishes some resources in Spanish.
    • International Dyslexia Association, Los Angeles Branch — hosts teacher trainings, conferences, and provides grants to support dyslexia programs in local schools. Published fact sheets on dyslexia in English and Spanish.
    • California Dyslexia Initiative Free Webinar Series — hosted by the Sacramento County Office of Education and funded by the California Department of Education. Also publishes professional development resources for teachers.
    • Learning Disabilities Association of America: Comprehensive informational resources for parents, educators, and adults. Recommendations for helpful apps, programs, and teaching materials. Also provides advice for folks who have just learned they might have a learning disability.
  • I want to know more about laws regarding dyslexia and special education ...

    • AB-1369: California Dyslexia Guidelines — under the guidelines, the state Superintendent of Public Instruction is required to provide technical assistance in implementing the guidelines to parents, teachers, school administrators and faculty members in teacher training programs.
    • SB-237: Dyslexia Risk Screening — this bill has not been passed.
    • Individuals with Disabilities Education Act (IDEA) — IDEA requires school districts to provide a free appropriate public education in the least restrictive environment for children with disabilities. The federal IDEA website has resources for families, including information on individualized education plans (IEPs) and dispute resolution.
  • I want to connect with other parents or dyslexia advocates ...

    • Disability Rights California — engages in legal and policy advocacy, and publishes resources for individuals with disabilities and their families.
    • Decoding Dyslexia CA Parent Support Groups — Decoding Dyslexia, a grassroots organization made up of families affected by dyslexia and educators, has parent support groups that meet regularly across California.
  • I want to go to college ...

Terms To Know
  • Dyslexia Terms

    • Phonemes: The smallest units of sound that make up words. For example, while the word “car” is spelled with the letters c-a-r, the phonemes involved are “/k/” and “ar,” or /kar/.
    • Phonological awareness: An individual’s awareness of and access to the sound structure of oral language. It is the understanding that spoken language can be divided into smaller units (i.e., words, syllables, and phonemes) and that those units can be identified and manipulated.
    • Phonological processing: The ability to understand, mentally store, retrieve and change speech sounds. Someone with a phonological processing deficit has a hard time segmenting written words into smaller parts.
    • Decoding: A skill used to break words down into syllables and phonemes.
    • Fluency: In reading, fluency refers to the ability to read a text accurately and quickly, focusing on comprehension instead of decoding.
    • Dyslexia: A learning condition that affects how a brain processes language, which usually manifests itself in difficulty reading. People with dyslexia often have trouble recognizing letters and understanding how combinations of letters create the sounds that make up our language.
    • Dyscalculia: A learning condition that affects a person’s ability to do math, and can make math take longer. Dyslexia can also affect math.
    • Dysgraphia: A learning condition that involves difficulty with writing — handwriting, typing, and spelling. Like dyscalculia, dysgraphia has a high rate of co-occurrence with dyslexia.
  • Education Terms

    • IDEA: The Individuals with Disabilities Education Act. Federal law that requires students with disabilities to have access to a “free and appropriate education,” including additional services or accommodations.
    • IEP: Individualized Education Plan. A plan developed by a support team to ensure that a child who has a disability identified under IDEA and who is attending an elementary or secondary educational institution receives their education in the least restrictive environment. Children receive a support team that also includes a child’s parents and at least one special education teacher and usually a general education teacher; a school district representative; and other various experts and representatives as necessary.
    • Specific learning disability (SLD): One of the 13 disability categories identified in the IDEA. If an individual has an SLD, it means they can have trouble understanding or using language, spoken or written, that may make it difficult to listen, read, write, spell or do mathematical calculations. Dyslexia qualifies as a specific learning disability.
    • Multi-Tiered Systems of Support: A series of gradually escalating responses to students struggling in class. This is an umbrella term for the many options for services available to school districts, and is focused on all students, not specifically students in special education.
    • Neurodiversity: The idea that all brains interact with the world differently, supporting the notion that there is no one “right” way of neurological thinking or behaving.
  • Sources: California Dyslexia Guidelines, U.S. Department of Education

What questions do you have about higher education?

Corrected August 30, 2022 at 1:28 PM PDT
A previous version of this story incorrectly described Elvis Garcia's test accommodations. Questions are read out loud by a machine.