Knowledge is ePowered: Distance Learning for People with Dysautonomia

By: Chelsea Goldstein, Dysautonomia Information Network

Homeschool, distance learning, remote education, e-learning, and tele-education are but a few terms to describe the various structures of schooling that can be done from home (either full-time or part-time) with the assistance of technology. To minimize confusion, we will refer to all of these terms as distance learning for the rest of this article.

If you or your child lives with dysautonomia, you may have been engaged in distance learning for some time. You may also have a story of your tireless battle with a school system to get distance learning accommodations. It is notoriously difficult to get these accommodations approved, especially when conditions are invisible, even though research demonstrates that students experience increased anxiety and poorer academic performance when they try to "catch-up" on classes they missed due to medical reasons (1).

Insert 2020, and distance learning is more or less a norm. On one hand, it can be infuriating that distance learning is all of a sudden available to all students when it was a struggle to get it previously. On the other hand, it can be a relief that you or your child is finally getting access to an education style that works for your needs.

Student Rights
If you have struggled to get approval for distance learning for your child who has chronic illness, it is important to know that they have rights.

Children have a right to free appropriate public education (FAPE) through the Individuals with Disabilities Education Act (IDEA; 2).  IDEA was enacted to ensure appropriate special education, accommodations, and related services are available to students with disabilities in public schools (3). 

Given this law, why do so many students with dysautonomia struggle to get education accommodations, especially accommodations for completing some or all of their education from home? 

1. Private schools are not held to the same federal standards (4), so if your child attends an unaccommodating private school you may want to consider talking with your local public school district. 
    
2. The term "disability" is loosely defined and often misunderstood. Many people have a stereotypical, singular view of disability represented by a permanent/progressive condition, and full-time use of a mobility aid, such as a wheelchair. More often than not, people with dysautonomia don't fit in that category. We may or may not use a mobility aid, and if we do we don't always need it 24/7. Many of us "look healthy" on the outside, and the roller coaster nature of our symptoms can cause people to point to our good days and say "They're fine!"
   
   Educators should be aware of, and open to, recognizing the diversity among people with disabilities but, unfortunately, this is not always the case.  When a decision-maker doesn't understand the complex nature of disability, students with dysautonomia may be labeled as "not disabled enough" for distance learning accommodations. 
    
3. IDEA states students have a right to appropriate accommodations, but the term "appropriate" is also poorly defined. When educators don't understand the nature of dysautonomia, they may decide that distance learning is not an appropriate accommodation for a student with the condition. 

Section 504 of the Rehabilitation Act also protects the rights of students with disabilities in public schools. Briefly, it states that no student should be denied the benefit of services that receive federal funds, including schools (3). If attending school in-person causes  your child's dysautonomia to flare, then you could argue that they are being denied the full benefit of education. 

The Americans with Disabilities Act is also in effect to protect people with disabilities from discrimination (3). It could be considered discrimination if your child is denied accommodations that promote learning in a suitable environment. The ADA has a broad and encompassing definition of disability.

Distance Learning Options
There are several ways distance learning can happen to meet your child's needs. Here are some things to know:

Communication is key. You should expect to be in frequent communication with your child's school system to arrange and enact distance learning accommodations. It is possible that your child's school has not worked with any, or very few, students with dysautonomia, so you will likely need to take an active role in developing an education plan that works for your student. In other words, "the squeaky wheel gets the grease."

You may want to start by communicating with your child's doctors. How could your child's treatments affect school performance? Could  a doctor help explain to educators how the symptoms of dysautonomia arise abruptly and make in-person classes difficult (4)? Educators may be far more likely to grant accommodations with a doctor's statement of support. 

It is also important that both you and your child build open communication with your child's teachers and administrators. It may take some time for people who have no prior exposure to dysautonomia to understand it, and these open communication channels will help educators get acclimated to your child's needs and symptoms so they, ideally, develop understanding and empathy over time. Even if you have formal accommodations already in place, teachers may be  more likely to reinforce and respect those accommodations when they have a personal understanding of your child's needs.

Option 1: Individualized Education Program (IEP)

An IEP may be suitable for a student who does not need full-time distance learning, but would benefit from accommodations for frequent absences, modified educational goals, and support to meet those goals. This may involve counselors, teachers, and school psychologists working with you and your student to develop customized learning goals that fit your student's needs and abilities. IEPs are free of charge in public schools, and the school should provide any support services needed (e.g., a tutor) to help your child achieve their education goals (4). 

504 Plans are similar to IEPs with one major difference - they do not outline specialized education plans or goals, but rather focus on ensuring accessibility accommodations. So, if your student does not need any modified education plans, but does need assurance of accessible education, then a 504 Plan may be ideal (6). 

Option 2: Homebound services

Homebound services may look a little different in each school system, but they are, essentially, some type of education provided at home (or another public location, like a library) for students who cannot attend school due to medical reasons. Homebound services can be offered short-term or long-term, and allow students to learn the same subjects as their peers (5).

When using homebound services, schools  may also provide families with needed technology, such as computers, and  encourage multiple avenues of communication through email, phone calls, video conferencing, and virtual learning environments, such as Blackboard. However, some schools may be resistant to providing homebound services because they can be expensive, may require extra teacher time, and they place significant responsibility on the student and parent(s) to manage the child's education (1). 

Of course, homebound services may be more readily available due to COVID-19, when many school systems are providing distance learning options for all students. One student writes in her blog that she had tried to get distance learning accommodations for years without success. Now that she can learn from home due to COVID-19, her migraines have dramatically improved (2). As mentioned above, it can be frustrating to be denied needed accommodations for years only to have them granted during a pandemic. The silver lining may be that while distance learning is challenging, teachers, administrators, and students are all growing more acclimated to this e-powered style of education. Your future battle may be advocating for the continuation of distance learning for your child, as needed, when the majority of students return to in-person classes.

Option 3: Tutoring

Tutoring can often be incorporated into IEPs and homebound services, or families can hire their own tutors to supplement their child's education. A major benefit of tutoring is that it is more flexible and casual than formal classroom instruction. If your child has struggled to keep up with education goals due to their dysautonomia, tutoring may provide that comfortable, "low-stakes" environment that helps them learn without added anxiety. The one-on-one nature of tutoring also means that your child and their tutor can focus on your child's specific challenges (5).

I tutored for several years in my twenties and it worked well to accommodate my own dysautonomia because I could arrange my own hours and tutor via video conference when I was in a flare. I loved working with homebound students and students with IEPs because it filled my daytime hours when other students were in school, and I felt I could use my own experiences of living with chronic illness to connect with students who needed adjusted learning environments. In other words, you may have a lot of options for tutors if you are looking for someone to tutor during daytime hours, and you may also want to consider a tutor that has experience with IEPs and chronic health conditions. 

Option 4: Hospital-based learning

Many hospitals provide education support for children who spend long stretches of time in the hospital. Typically, a nurse, social worker, or case worker can help direct you to on-site education resources. Support usually comes in the form of classroom learning, which is small groups of children who are taught in a hospital classroom, and bedside learning for children who are too ill to leave their hospital rooms. Hospital educators are licensed teachers, will work with a child's home school, and should work around the child's medical tests and energy levels (4). Remember that your child may need some type of combination approach - flexibility is key!

For Parents
School may be low on your priority list when you are helping to manage your child's medical care and day-to-day health. Here are a few tips for education support:

Our tips for parents come from this awesome blog by a woman who homeschools her children with chronic illness (7). A brief recap...

1. Know your child's signs. A sign may be a look, expressing irritability, a lack of focus, etc. Your child's signs probably signify pain or exhaustion, and when the signs arise it is always best to take a break.
2. Know your child's prime hours. Some people with dysautonomia struggle in the morning or have a late-afternoon slump. When does your child function best? It's probably not realistic to do school work seven hours a day, so try to maximize those prime hours. 
3. Watch for depression. Your child may feel depressed if they have minimal energy to engage in "typical" activities for their age, like school. Our article, You're Not Alone: Understanding Depression and Chronic Illness, may be a good place to start to learn how depression and dysautonomia may coexist. 
4. Try to stay socially connected. Connection can be a strong tool to manage depression, and your child may be feeling a lack of connection if they are homebound, especially in the age of COVID-19. While in-person interaction with friends may not be an option, encourage your student to stay connected with others through email, phone calls, video chats, and even participation in vetted, online support groups or interest groups. You could also talk with your child's teacher to have their classmates write letters, emails, or put together a small package.
5. Let go of extras. It can be enticing to encourage, or even push, your child to participate in extracurricular activities that they have always enjoyed. If your child is struggling to keep up with school, let alone extracurriculars, this encouragement could quickly turn a beloved activity into a source of stress. You may want to consider asking the organizer if there is a way your child could decrease their responsibility, such as sharing an officer position in a club with another person, or if the activity is something that your child can drop-in on only when they feel healthy enough to do so. If modifications aren't possible, consider letting go of the activity. Your child can always return to it if their health improves. 
6. Prepare for good days and bad days. This blogger has created good and bad day lists with her son. On good days, he works down a master list of assignments for each subject. This helps  him use his energy on substantial schoolwork, rather than trying to figure out what to do next. His bad day list includes less taxing activities that  are still mentally stimulating, such as creating a YouTube playlist of course content, listening to an audio book, or finding relevant current events online.

What if YOU are the one with dysautonomia and you are suddenly responsible for managing your child's distance learning during COVID-19? 

Parents all over the country are struggling to manage distance learning in the age of COVID-19. As you navigate these times, please, please take it easy on yourself. You are parenting, managing a debilitating chronic illness, AND you may suddenly be a homeschool teacher, among all of your other obligations. It's okay to get frustrated. It's okay to be overwhelmed. It's okay to set your to-do list aside. And it's okay to say "good enough." 

You may also have an option of whether your child attends school in-person, remotely, or some combination of the two. Know that whatever you choose for you and your family is the right choice. For example, if your child's school district is holding classes in person, you may worry about your child catching the virus and exposing you and the rest of your family. If this is the case,  you may want to request distance learning accommodations. 

Or, perhaps, you have the option of in-person classes and you just don't know how you will manage your days without the break from parenting that school provides. In this case, you may want to have your child attend in-person classes, while ensuring that both your child and their educators practice precautionary measures to keep you and others as protected from the virus as possible.

If you do decide to move forward with distance learning, here are a few tips to help you manage it all:

1. If you have the resources to hire help, such as a tutor or housekeeper, you should not feel guilty for doing so! Do what you need to do to get through this unprecedented time. 
2. Maybe you don't have the resources for professional help, but you may be surprised at who is willing to pitch in! Perhaps a grandparent may want to assist with schooling, or your spouse could rearrange some of their obligations to help. This may even be a good time to team up with another parent, or small group of parents who want to share distance learning responsibilities. As long as you all agree to keep your pod tight to minimize risk of spreading the virus, your children could "switch off" between parents so that you have some days that you are not responsible for schooling. 
3. Remember that your family's physical and mental health are priorities during this time. People who are frustrated or in pain  can lash out. Try to forgive your child's outbursts, as well as your own! Most importantly, be sure to give yourself and your child(ren) breaks as you need them, and don't forget to still find ways to have fun (7)!

For College Students
If you are a college student with dysautonomia, you may have options as to whether your education is online or in-person, and your options have likely been dramatically impacted by COVID-19.

Deciding whether or not to attend college in-person when you have dysautonomia, let alone when you have dysautonomia AND there is a pandemic,  is an important and difficult choice. Here are some things to consider:

1. Dining: If you have dietary restrictions, you should definitely  do some research into how accommodating and flexible dining is on any potential college campus. Some questions for an admissions counselor could include: What food options are there for your specific dietary needs? What are the hours of different dining areas (i.e., are they open when you typically need food)? Where are the dining options located in relation to your dorm and classes (i.e., how far will you have to walk to get food if you do not feel well)? 
   
   Considering COVID-19: Many universities have changed their dining arrangements to minimize the risk of spreading COVID-19. This may include restricted dining hours, or prepackaged meals delivered to dorm rooms. If you use diet to manage your symptoms, then you should evaluate whether or not COVID-19 dining rules could impact your health. One person with chronic illness reported that  limited food options on campus during COVID-19 was a major reason he decided not to return to campus. He knew his health could quickly deteriorate without easy access to the foods he needed (8).                                                                                                                                                                                                                                            
2. Scheduling: Every college student knows the stress of enrollment, especially when they need to take those difficult to get into courses. In addition, people with dysautonomia have to consider what times of day they can realistically get to class. Early mornings are out for most of us, and back-to-back classes without a long enough break to lay flat may also limit your options. Talk to your advisor(s) about any scheduling accommodations you may need. At some universities, students who register for accommodations through disability services get earlier enrollment slots. Scheduling can be one reason people with chronic illness prefer online courses - oftentimes, they can be completed on more flexible timelines, and even when they are scheduled for specific times you can save energy by learning in the comfort of your home environments (and maybe your PJs; 9). 
   
   Considering COVID-19: Similar to dining, the availability of classes and opening hours of other on-campus services, such as the gym, may be limited during COVID-19. One student talks about how he has to plan his exercise at precise times to avoid exacerbating symptoms (8). If you have dysautonomia, mild exercise may be an important part of your health routine, but you likely also have to be meticulous about planning it around your eating, resting, and class hours to avoid negative symptoms. Will this be possible with COVID-19?

3. Medical Care: A major consideration for college attendance is how you will get access to your medical care, especially if you attend school far from home. Some students coordinate appointments with their specialists when they are home on breaks, and are able to get medications and other medical supplies mailed to their universities. Even if you are able to coordinate most of your medical care from afar, you should still communicate with local providers to ensure someone can help you in emergencies. Is the university health department aware of dysautonomia? What is the reputation of the local hospital?

   Considering COVID-19: It is daunting to think about a potential outbreak of the virus at your university, but it is an important precautionary measure to consider if you have dysautonomia. So, if there is an outbreak, do the local healthcare facilities have the capabilities to handle it? Would the local providers know how to manage COVID and your dysautonomia (8)? 

4. Support: Support is important for anyone living with dysautonomia. It may be especially important if you are attending college in-person far away from your typical support networks of friends and family. If you are being assigned a roommate, you may want to let your college know about your condition and the type of environment you need to stay healthy so that they can match you with someone with similar habits or needs. You could also talk with admissions and disability services about any available support or advocacy groups on campus.

   Considering COVID-19: While emotional support is absolutely critical as you attend college with chronic illness during a pandemic, you may also want to consider the more tactical meaning of the term support. What is your university's policy for quarantining and isolation if you get COVID-19 while on campus? Would someone be able to help you with day-to-day tasks if your family is far away, and it is not safe for you to go home? It is important you discuss the possibilities with staff, faculty, and your family so that you have an idea of how you could handle the situation if you do get sick. 

5. Mental Health: College is a time filled with tremendous adjustment for everyone. It may be particularly difficult when you factor in chronic illness. We all know the level of planning, foresight, flexibility, and management that is required to get through day-to-day tasks with dysautonomia, and it is important that you take the time to honestly assess whether you feel up to managing your health needs in a college environment. You may even consider talking through your options and concerns with a mental health professional. Remember that you should never feel ashamed if you decide that attending college in-person is too difficult or stressful given your circumstances. You made an honest and brave decision! There are several alternative options that range from entirely online programs to attending some classes in-person at a local school while you live at home. 

   Considering COVID-19: If you have felt any type of anxiety or unease as you have read through these considerations, you may want to think about attending college remotely, for now. There is no reason to put yourself at physical and mental risk, and you can always attend college in-person when it is safer to do so.

Resources

Article Citations

1. Jaress, J. & Winicki, E. (2013). Our Children with Chronic Illness in School: Finding and Bridging the Gap. Georgia Department of Education IDEAs Conference. https://www.gadoe.org/Curriculum-Instruction-and Assessment/SpecialEducationServices/Documents/IDEAS%202013%20Handouts%203/Our%20Children%20with%20Chronic%20Illness%20in%20Schools.pdf
2. Rosewater, J.T. (2020, July 5). Access to Distance Learning for Students with Chronic Illness. Third Estate Art Quaranzine. https://www.thirdestateart.org/quaranzine/2020/7/2/m437w6bfalev0qnk82hel5dutkwhc6
3. About IDEA. (n.d.). US Department of Education. https://sites.ed.gov/idea/about-idea/#Rehab-Act
4. Pollio, L. & Sciolla, J. (2019, October). Balancing Academics and Serious Illness. KidsHealth. https://kidshealth.org/en/parents/academics-illness.html
5. Lee, S. (2020). Academic Support for Students with Serious Illness: Learning Options, Resources & Tips to Help Students Succeed in School. Community for Accredited Online Schools. https://www.accreditedschoolsonline.org/resources/student-serious-illness/
6. What is the Difference Between an IEP and a 504 Plan? (2019, April 30). University of Washington DO-IT (Disabilities, Opportunities, Internetworking, and Technology). https://www.washington.edu/doit/what-difference-between-iep-and-504-plan#:~:text=The%20504%20Plan%20is%20a,access%20to%20the%20learning%20environment
7. Woodie, H. (n.d.) Homeschooling Teens Who Have a Chronic Illness. Blog, She Wrote. https://blogshewrote.org/homeschooling-kids-with-chronic-illness/
8. Spangenburg, E. (2020, August 3). Student Voice: 'How Can I Ensure My Own Survival When There are No Guarantees for Even My Healthiest College Classmates?' The Hechinger Report. https://hechingerreport.org/student-voice-with-diabetes-and-opting-to-stay-off-campus/
9. Donovan, J. (2015, July 21). How Online Learning Benefits Students with Chronic Health Issues. ValuED. http://blog.online.colostate.edu/blog/online-education/how-online-learning-benefits-students-with-chronic-health-issues/

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