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Many Disabled, Chronically Ill Students Entering College Lack Support

Many Disabled, Chronically Ill Students Entering College Lack Support

Picture of Liz Morasso, LCSW

Editor's Note: The Children’s Health Matters blog is a space dedicated to sharing important new research, policy ideas, clinical findings and journalism on child health and development. It’s part of our effort to spur a conversation online and off that offers a rich and varied set of perspectives. As part of that mission, this blog will feature a new column once a month with insights offered by two of Children’s Hospital Los Angeles’ leading community-based research teams.

The first of the two groups is made up of community-based researchers who are tackling pediatric health challenges stemming from obesity and diabetes. Our other group of Children’s Hospital L.A. contributors is focused on severely ill children who are aging out of pediatric care and the services and benefits that formerly supported them.This post is from clinical social worker Liz Morasso, a member of the second team of contributors.

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Like most 19-year-olds, I craved independence and chose a college far from home.  However, one thing that set me apart from others my age was my diagnosis of rheumatoid arthritis and eventually, systemic lupus. Getting into the Catholic University of America in Washington, D.C. with the support of academic scholarships was my way of saying: I can do it all, despite having a significant disease. That was even my college’s tagline: Do It All!

A few weeks before finals at the end of my sophomore year, I suddenly found myself struggling to speak, was hypersensitive to light and sound, and I was anxious about leaving my dorm. Within a few days, I was in intensive care with a diagnosis of Central Nervous System Lupus, or Neuropsychiatric Lupus – a strong, independent college student’s worst nightmare.  

I have always prided myself on my ability to talk my way of out anything, even in the face of physical challenges. Now I had suddenly lost my ability to speak or write – a symptom caused by the swelling of blood vessels in the brain and spinal cord – with no one able to tell me when this terrible dream would end. Once the initial shock wore off, I couldn’t help but think of school. Fortunately, chemotherapy and stronger immunosuppressants had put me on the road to recovery. But did my professors know where I was or what had happened to me? I returned to discover that I received incompletes in all my classes, lost my scholarship and had to start the semester and the same classes from scratch. I also learned that had I registered with the school’s office of disabilities, a resource available to all students with a chronic illness, I would not have had to spend the next two years fighting to regain my academic good standing. I never recovered my scholarship. I fell through the cracks not only because I knew little about the disability office but because, had I known more, I probably wouldn’t have sought it out. I was a kid, feeling invincible, fiercely independent and unwilling to acknowledge I might need help. 

Today, as a clinical social worker at Children’s Hospital Los Angeles who now works with teens and young adults living with chronic illness, I regularly struggle to find information on services and eligibility criteria for the estimated 6% to 9% of high school students with a disability who are about to make the transition to college. Most disability offices clearly define eligibility for students with physical, sensory or learning disabilities and mental illness. But it’s far less clear how these services and resources pertain to students with chronic illness, especially illnesses that manifest themselves episodically or invisibly. The disruption caused by such illnesses can be devastating for students without support and accommodation from their school.

A key barrier to my enrolling in my college’s disability office was the simple word “disability.” I had never considered myself “disabled.” According to a 2005 U.S. Department of Education longitudinal study, about half of those with disabilities enrolled in post-secondary coursework did not define themselves as disabled. Outreach from the Office of Disabilities at my school was geared towards those with learning disabilities or formal transition plans, which I never obtained. The service didn’t seem relevant to me. My perception of disability was not unlike that of many other 18 year olds: Disabled students relied on wheelchairs, were visually impaired or were students who needed someone to take notes for them. I didn’t fit into any of those categories when I enrolled. The Department of Education survey also found that 40 percent of students in their study did not inform their schools of their disability.  

Some of the young people I work with have suggested they are able to “silence” their condition and so have no reason to inform the disability office in their university of their potential need for accommodation. Most still see themselves as immune to the consequences of risk-taking.

In the 2012 Disabled Students Report released by California State University system, disabled students were found to have lower graduation rates (46.9% vs. 51.7%) and persistence rates (55.3% vs. 59.2%) compared to students without disabilities. Without active efforts to better support all students eligible for disability services, many young adults will be denied the opportunity to enjoy a full college experience and realize their academic and life potential.  Our society can’t afford to lose the potential wealth of human and social capital this population can offer.

As a clinician, I have found that the younger the interventions begin, the better the chances the patient will actually use school resources. Advertising a college’s disability services office as a tool for success starts with middle- and high-school counselors, medical providers, and other support programs, such as transition-readiness interventions, which prepare patients for both transfer of care to an adult health care facility and assists with the transition to adulthood.

Schools also need to more clearly define what “disability” looks like in their student population, and student-led or social media campaigns may persuade more students to seek out support services. DePaul University’s Chronic Illness Initiative, for example, provides support tailored to the needs of these students and should be a model for programs nationwide.

Schools and federal regulators should develop greater accountability, oversight and creativity in support services for students with chronic health conditions. Although existing law outlines some basic requirements for schools receiving federal aid, most accommodations and programs are optional, based on the student population and the school’s own assessments. Ideally, the process of enrolling in services for “disabled” students should be as easy and stigma-free as signing up for a meal plan.

Image by Anna L Martin via Flickr

Comments

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I am the parent of a son with autism, who will be starting high school this fall. I did not know that such an office exists on college campus, I am struggling trying to find transition information about possible college choices since he is starting high school this August, 2014, as he will need tuition aid, since I can not afford college as a single working mom, and I cannot get his grandfather to help with the costs either, as I have told the grandfather that my son cannot have any assets in his name, or he will not be able to get college tuition aid. My son will probably need to live at home during college due to costs and he does not like large groups of people.

Picture of Liz Morasso, LCSW

Hi Kimberly,

Hi Kimberly,

Thanks so much for reading my post and reaching out! I am so happy to hear that you are starting the planning process early. Disability offices are great resources and, I obviously think, underutilized. Are there other types of transition resources that you are looking for besides school resources? Below are some websites that I like that address college and autism. Http://www.gottransition.org/ is also a great resource but is more general. Feel free to e-mail me at emorasso@chla.usc.edu or give me a call at (323) 361-3240 to chat more.

Websites:

http://www.thinkcollege.net/ 

http://www.autismspeaks.org/family-services/resource-library/post-second...

https://autisticadvocacy.org/2011/10/navigating-college-handbook/

http://collegeautismspectrum.com/

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We find it difficult to help our son recognize his disability and adjust to what it means for his future. He is bombarded every day with teachers pushing for a college education. But what it means for him is totally different. Not one educator addresses his needs and discusses his potential. His case mgr. has helped but he is the only one. Help or tell us where to go, please.

Picture of Liz Morasso, LCSW

Hi Rebecca,

Thanks so much for reading my post and reaching out! College is not always the answer. There are tons of other ways to prepare and develop one's future (the way they want to). Many of our patients felt the same way - pressured into college and feeling badly when something doesn't work out. We have many patients in trade tech/vocational programs, taking time off to focus on their health and well-being, or volunteering for a year to find what they really want to do. These patients not only find themselves but also feel empowered that they were able to find their place. What area do you live in? What are some of your son's interests/hobbies/skills? What are some things that he doesn't like or may have difficulty doing because of his disability? It's great to hear that his Case Manager is supportive! The issue of your son not recognizing his disability is tough one. I know older adults that have had "disabilities" their whole life and still don't recognize it. Your son's personal identity may or may not include being "disabled." Supporting him in figuring out what that looks like is what's important, not necessarily when it happens. I can tell you are an amazing parent! Keep up the great work! Feel free to e-mail me at emorasso@chla.usc.edu or give me a call at (323) 361-3240 to chat more.

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Support is the most important thing that we disabled really enjoy. Without reliable transportation I've recently been unable to participate in all the things I love doing.

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My son has autism and tourettes and a plethera of other problems that sometimes requires him to miss school. He always has a dr.s note but the vocational school he goes to refuses to accept them. The days still count against him. He has a 'B' in his class and the vocational school which is federally funded has accepted his highschool iep but refuses to do anymore than that. Read the fine print very carefully. I am getting ready to fight the fight again which you think at this point I should not have to.

Picture of Liz Morasso, LCSW

Hi Beth,

I am so sorry to hear about the difficulties you are having with your son's school. Unfortunately, even if a school is receiving federal funding there are only a few (about 4-5) services that they HAVE to provide. The rest is up to the school. Schools make these decisions based on their population and resources. What area do you live in? I might be able to find some advocacy resources in your area. I absolutely agree with you that you shouldn’t have to fight the fight but am so happy to hear that you've got that spirit!

Liz 

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Edelman, Krasin & Jaye, a NY-based personal injury law firm are making a scholarship available to students living with chronic illness. The scholarship is open to students accepted into any accredited US college or law school in the United States.

Scholarship: $2,000: The award which will be distributed among three students; there will be one award of $1,000 and two awards of $500.

Requirements: Students will be requested to write an essay; the subject of the essay will be provided upon submission of the application request.

To Apply: Students must apply through our website, at http://ekjlaw.com/. There is a section on the homepage (scroll down) titled “Scholarships” students may contact us via this portal to apply. Upon receiving their request we will send qualified applicants a Scholarship Application Form and confirmation email with all the details and information necessary to apply for the scholarship awards.

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The office of Michael Jeffcoat, a South Carolina-based personal injury law firm. Mr. Jeffcoat is offering a scholarship award available to students living with chronic illness. The scholarship is open to students accepted into any accredited US college or graduate school in the United States.

Scholarship: $1,000: The award one student.

Requirements: Students will be requested to write an essay; the subject of the essay will be provided upon submission of the application request.

To Apply: Students must apply through our website, at http://www.scinjurylawfirm.com/. There is a section on the homepage (scroll down) titled “Scholarships” students may contact us via this portal to apply. Upon receiving their request we will send qualified applicants a Scholarship Application Form and confirmation email with all the details and information necessary to apply for the scholarship awards.

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I am the mother of an 18 year old son who is both on the spectrum (reasonably high functioning) and quite chronically ill with a severe GI motility/functional visceral pain disorder. He is j-tube dependent and experiences seemingly random, frequent, debilitating bouts of intense nausea and gut pain. We are struggling (floundering actually) in developing a meaningful, realistic transition plan as he slowly but surely inches his way towards a high school diploma sometime in 2017. I think he will require a customized program that involves combining asynchronous online learning combined with one on one support ( probably via Regional Center) aimed at sub par executive function, learned helplessness, and SLD issues. We are also trying to avoid a "shut in" situation that will lend itself to social isolation and endless video gaming. I was excited to learn about the DePaul U. School for New Learning/Chronic illness initiative, only to then find out the program is now defunct. We r seeking resources in the Los Angeles region, preferably convenient to the San Fernando Valley where we live. R u aware of any local professional individual(s) agencies that can assist in transition assessment/ planning/ implementation for our son. Do u or anyone on your team at CHLA offer such services? We anticipate having our son undergo a formal, strengths-based Independent Expert Evaluation in the domain of transition services through the IEP process.

Thank you in advance for any insight or information you can supply.

Kind regards...

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I also was accepted to CUA; the head of disability services looked at my necessary accommodations and told me there would be no problem.

Except she was replaced that summer; the new head of disability wouldn't fight for me with professors. I would have an A in a course but be told that since I was missing more than 3 days due to a chronic illness that my entire grade would be dropped by one letter. I had to withdraw from Classical Mind/Philosophy twice before I had a professor who would work with me. (I have chronic Lyme Disease; he was not only compassionate but knew someone who also had it and understood my needs. My grade was 97% when the semester ended.)

I've been told the NEW head of disability goes to professors in cases of necessary absences and tells them they have to work with the student; not doing so violates the Americans with Disabilities Act and puts the school and the professor at risk of being sued.

But I transferred out a few years ago. My new university assured me I'd never have to deal with that again, and I haven't had to.

Until...yesterday. Last day of Drop/Add, a professor refused to work with me. And it was too late to set up a meeting with disability, who told me to drop the course and take another. Something I shouldn't have to do.

I'm sending an email. But there is an element of civil rights involved in this, and those rights are being violated.

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In no way do I wish to minimize what you went through!

The university worked with you far more than they did with me; that was all I meant by saying you were lucky. I had almost no help from the people who should have been helping me. (I did have some wonderful staff and faculty members who chose to help me, though, which I appreciate to this day.)

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