Statistics on the Issue: Why the Department of Education must issue Guidance

In this blog series, you will hear from members of NCLD’s Young Adult Leadership Council (YALC) about the importance of college accommodations and what we are doing to make it easier for disabled students across the country to get the accommodations they are entitled to under the Americans with Disabilities Act (ADA). Here we start with a review of some background information and statistics on higher education for students with learning disabilities. Then several members of the YALC share their own stories on the accommodation approval process in higher education and why Secretary Miguel Cardona, President Joseph Biden, and others in the administration should support students with disabilities.

NCLD’s Young Adult Leadership Council is made up of 24 young adults with learning disabilities and attention issues from around the country, acting as disability activists for the 1 in 5 people in this country with learning disabilities and attention issues like us. We represent the diverse community of people with learning disabilities and attention issues. Learning disabilities impact how people learn and process information, how we read and write, and more. A few of the learning and attention-related disabilities represented on the council include; dyslexia, dyscalculia, dysgraphia, nonverbal learning disability, ADHD, and specific learning disability. In being learning disabled, basically, all of us have experienced some barriers in life due to our access needs not being adequately supported.

In January 2022, we met with the US Department of Education to specifically talk about the access barriers we have experienced in higher education, and request that they take action to dismantle some of the systemic barriers keeping disabled people out of higher education. Specifically, we urged the Department of Education to issue guidance that would require institutions of higher education to accept the documentation of receiving special education services or accommodations in K-12 settings as evidence enough of a disability when seeking accommodations in postsecondary settings. We are hopeful the department will take action on this issue soon.

When he was still a presidential candidate, President Biden shared his Plan for Full Participation and Equality for People With Disabilities. Biden pledged to ensure that all disabled students would have the access and the support they need to succeed in educational settings. This included a pledge to support the post-secondary education of students with disabilities. The campaign plan stated that Biden would: “direct the Department of Education to provide guidance to all postsecondary programs to accept the accommodations students with disabilities have used in pre-K-12 settings for postsecondary settings”. We urge the Department of Education to follow through on that campaign promise. 

Many disabled students receive accommodations in K-12 education, usually laid out in the form of a 504 plan or an IEP (Individualized Education Program). In fact, according to a National Longitudinal Transition Study, as many as 94% of students with learning disabilities received accommodations in high school [1]. However, many students with disabilities experience barriers in receiving the same accommodations once they transition to higher education, with many receiving fewer, or in some cases, no accommodations at all. In fact, that same study found that only 17% of students with learning disabilities received accommodations in higher education settings[1]. Further, in a report by the National Center for Special Education Research, 43% of those with learning disabilities who did not receive accommodations wish that they had[1].

Many universities require that students have a diagnosis no more than 3 years old, and they do not accept K-12 IEPs or 504 plans as sufficient documentation of a disability. When you go to request accommodations at institutions of higher education, you are put in a position of needing to PROVE you are STILL disabled even after having gone through the comprehensive evaluation process in K-12 and receiving accommodations for years. Getting a new diagnosis is not only unnecessary, but it is burdensome, costly, and stigmatizing. This process of getting accommodations at institutions of higher education is unnecessarily confusing and requires exorbitant documentation that is difficult to get and expensive. About 50% of parents of students in high school and recent graduates report that they felt the process was unnecessarily unclear and difficult [3]. A new diagnosis of a learning disability costs on average between $500 and $2500 [2], further pushing a classist divide in who gets an education and support and who doesn’t. Even if you can afford a new diagnosis it can be hard to find an evaluator depending on where you live in the country and it can take months to get through the waiting list to be evaluated.

These barriers result in students not receiving needed accommodations. We know from research on learning disabilities that learning disabilities do not go away. Students’ learning disabilities and need for support does not disappear when they start their post-secondary education. We are concerned for the number of students with disabilities who are not receiving their needed accommodations. These numbers indicate there are significant systemic barriers to students with disabilities receiving accommodations. For several years, NCLD has championed the RISE Act, which would enshrine in law that colleges and universities must accept an IEP or 504 plan as evidence of a disability. While RISE has bipartisan support, Congress has not yet passed this legislation, requiring that the Department of Education take action to address these barriers. This is bigger than just learning disabled students not receiving accommodations. A National Longitudinal Transition Study showed that young adults with disabilities had a post-secondary completion rate of 38%, which was lower than non-disabled students[1].

With all I have said on the struggles learning disabled students are facing, we call to attention the presence of these inequities in our current system. We request the Department of Education to help in ensuring institutions of higher education fully adhere to the requirements of the ADA in providing reasonable accommodations to disabled individuals in order to create equitable access to education and future employment, by issuing guidance to institutions of higher education that they accept K-12 accommodations plans as proof enough of disability.

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References

[1] Sanford, C., Newman, L., Wagner, M., Cameto, R., Knokey, A.-M., and Shaver, D. (2011). The PostHigh School Outcomes of Young Adults With Disabilities up to 6 Years After High School. Key Findings From the National Longitudinal Transition Study-2 (NLTS2) (NCSER 2011-3004). Menlo Park, CA: SRI International.

[2] LDA America. Adult learning disability assessment process. Retrieved from https://ldaamerica.org/info/adult-learning-disability-assessment-process/

[3] NCLD May 2016 survey of over 800 parents on Understood.org merging Issues. New York: National Center for Learning Disabilities, 2014

Josephine’s Story

Hello, my name is Josephine Olson. I am a senior at Boston University, majoring in American Studies with a minor in Deaf Studies (American Sign Language). I was almost forced to postpone my freshman year of college because the Department of Disability Services at Boston University refused to accept my 504 Plan and three previous Individual Educational Program (IEP) evaluations. I have had an IEP since first grade; yet, I experienced the costly and stressful burden of needing to be re-evaluated right before college for a permanent disability that I already had been diagnosed with multiple times.

 Despite using my accommodations every day since first grade, the university stated that my documentation was too old. I could not fathom attending college without the accommodations I needed to express my intelligence and knowledge fully. 

I have dyslexia and a working memory deficiency. This is my learning disability. My brain processes information differently, which is never going to change, no matter how many coping skills I utilize or academic achievement goals I reach in school.

Going to college without accommodations was not an option. My accommodations are not a privilege; they are my right to an accessible education. Success in school does not mean that you are cured or no longer need accommodations; it means the right accommodations are in place to allow a student to perform at their intellectual ability. You would not expect a physically disabled high schooler who can play basketball in a wheelchair to now have to start playing without one. Taking away academic accommodations from a student with learning disabilities is harmful and discriminatory.

In my situation, my family had the contacts and resources that most students do not have access to, especially in a short amount of time. I was able to find an available educational psychologist to update my testing quickly for several thousand dollars. In the Chicagoland area, most testing facilities have a three to six-month wait period for appointments and cost $1,500 to $5,000 dollars. If students can not get updated testing through their school, this is an economic barrier that can bar them from seeking higher education. 

When colleges require students with learning disabilities to get new evaluations in order to receive support from Student Services, only those who can afford new testing will receive the education they deserve to reach their full potential. All universities should accept high school 504 Plans and IEPs as proof of disability. Creating an accessible educational environment should be the burden of the school and not the student.

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Josephine Olson is a member of NCLD’s Young Adult Leadership Council (YALC).

Kayla’s Story

Hello, I am Kayla Queen and I have dyslexia. I hold a BA in International Cultural Studies and a Certificate in Intercultural Peacebuilding from Brigham Young University – Hawaii. I started graduate school at the University of Nevada, Las Vegas as a Higher Education Major and have discontinued the program.

BYU-Hawaii

As a freshman, I had to be reevaluated before receiving accommodations in college. Luckily this was a service BYU-Hawaii provided for free but due to the small size and remote location of the campus I had to wait until my move-in date to arrive on campus and meet with Disability Services. As someone who has studied student development theory, looking back I see requiring new testing hindered instead of fostered healthy student development for me. While I should have been forming connections with my peers and figuring out with them how to use Canvas and the library circulation desk, I was stuck testing. 

It was unnecessarily harmful to rehash my fears and insecurities surrounding having a learning disability. This is especially true when you add insult to injury. Consider the fact I was being set up to enter academia where learning disabilities are stigmatized and professors undermine your disability even with documentation. Making a big deal out of documentation and learning disabilities just adds to the feeling of being othered and deepens the frustration when soliciting needed support is hard.

Testing was taxing and took about 10 hours taking place over the first and second week of school. Many students do themselves a disservice by passing on accommodations but I see why. Getting approved for accommodations is demanding and it doesn’t guarantee you won’t receive pushback for seeking the support you need. Getting accommodations needs to be made more realistic but we also need to ensure that we increase the number of students protected and the strength of that protection.

UNLV

In 2018 I started graduate school at UNLV but what I experienced was unprecedented and resulted in me leaving school indefinitely. I started the accommodation process a couple of weeks before my classes started but the quarter was more than halfway over by the time I had accommodations in place. This was due to the university’s procedures which were wildly different from the other university I had attended. UNLV only reviews applications for accommodations every two weeks, then if approved you have to meet with accommodation coordinators and then set a separate appointment with a coordinator of accessible technology. In my case, the accommodations coordinator who was assigned to my case was on a two-week vacation and my request to meet with someone else in the interim was denied. Since it took too long to get the accommodations in place I ended up taking an incomplete and starting my program on academic probation as a result. 

There were no guidelines to keep the DRC accountable for granting accommodations in a timely manner even when they had all the necessary documentation of my disability. I made up that class in the fall and then transitioned from part-time to full-time in the spring while starting to work as a Graduate Assistant but continued to have a hard time getting accommodations properly in place. Ultimately I decided to discontinue my academic program, not because of grades, but due to constant issues getting reasonable accommodations implemented. 

Institutions of Higher Education would see much better outcomes if they sought to lighten the burden of managing a learning disability for students who have them. When the process of getting accommodations is so time-consuming and time-sensitive, financially burdensome, and emotionally draining that it hinders a student’s ability to learn, you know we have a deeper problem than “having a hard time learning”. 

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Kayla Queen is an NCLD Young Adult Leadership Council (YALC) member. Connect with Kayla on LinkedIN here.

Rachelle’s Story

When I moved to start my Ph.D., the biggest concern on my mind should have been preparing to start up my classes and research. But instead, all I could think about was the anxiety I felt about requesting disability accommodations. I am dyslexic with ADHD, and while I know I have the potential to thrive in my Ph.D. program, I am aware of how much I depend on accommodations in order to make education accessible. Completing a degree without accommodations is not an option for me.

But I should have had nothing to worry about going into my accommodation meeting. I have an official diagnosis of both dyslexia and ADHD (both disabilities protected under the ADA) and I have been diagnosed and receiving accommodations for these disabilities since early elementary school. Also both are lifelong neurologically based disabilities that can not go away. I am dyslexic with ADHD, that is not changing.

However, my university, along with many universities across the country, requires a student to have a diagnosis within the last five years, even for disabilities like dyslexia that by definition do not go away. I knew people personally who had been denied disability accommodations due to having a diagnosis over 5 years old, I knew this could be possible for me.

Stricken with anxiety for months leading up to meeting with the disability services office, I went to request my accommodations. I had at this point already gone through this process before with the three post-secondary institutions that I attended previously. I knew what to expect in this meeting, including the type of documents they wanted and the type of questions they would ask me. However, this time it was different, the odds of me getting accommodations were less in my favor since my documentation was older than 5 years.

I knew I would have to prove that my dyslexia and ADHD had not gone away, that I really did need accommodations like my past diagnosis said. On my way to this meeting, I tightly gripped a 1.5 inch stack of documents containing detailed evidence of disability and accommodation history. Here’s a brief list of just a portion of my documentation: (1) my initial diagnoses evaluated outside of the schools, (2) multiple disability reevaluations by public K-12 school, (3) every version of my IEP throughout K-12 (with additional letters written by teachers of how my disabilities affected my learning, which accommodations I actually used in the classroom and how often, and how each accommodation was necessary), (4) the accommodations I was granted at three previous post secondary institutions (with records from the disability services office of how often I requested and used each accommodation), (5) the official accommodations I was granted on multiple standardized exams (i.e. AP exams, PSAT, ACT, and GRE), and much more beyond this. I don’t know any dyslexics with more documentation than I had (excluding a diagnosis from less than five years ago), but would it be enough? In addition to these documents, I had in my hands a prewritten printed speech I planned to say in the meeting to try and prove my case.

Going into this meeting I was so scared of being denied accommodations that I ended up having an anxiety attack in the lobby of the disability office. I thought, “what do I do if they deny my accommodations? I have worked so hard to get here and being a researcher is my dream, but without accommodations is this even possible for me? Would I have to drop out? How long would I make it before I would drop out?” I was spiraling. I know academia is not structured for disabled students like me. But without accommodations to level the playing field what did I think I was doing here?

After the meeting they ended up granting me accommodations, deciding my diagnosis from 6 years ago was good enough as it was in combination with my extensive additional documentation. But while I got my accommodations, I should not have had to go through that much anxiety to get them. It was an invalidating experience having to prove that my disability and need for accommodations had not disappeared. Also, many LD students who had K12 accommodations do not have the level of documentation I have, and they should not have to. We know that LDs are lifelong disabilities that do not go away with age. So why do universities require students to have reevaluations redone so frequently? This is unnecessary and costly to students. This results in at best my situation that was a highly anxiety inducing and invalidating experience and for others it results in not receiving accommodations for clearly diagnosed disabilities and possible drop out as a result.

Systemic barriers in disabled students’ access to higher education must be acknowledged and dismantled. We are urging the Department of Education to take steps towards equity in education access, by issuing guidance to postsecondary institutions that they accept IEPs and 504s as evidence enough for disability accommodations.

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Rachelle Johnson is an NCLD Young Adult Leadership Council (YALC) member.