Some children with POTS would benefit from a 504 plan at school. This is especially true if your child has debilitating symptoms and misses quite a bit of class. The goal of a 504 plan is to protect your child from discrimination based on medical disability.
Section 504 of the Rehabilitation Act of 1973 requires school districts to provide a free and appropriate education for qualified students with disabilities. Children with dysautonomia often meet the requirements for a 504 plan, which will protect them from discrimination based on their medical disability. 504 plans are created separately for each individual child, and lay out all of the specific accommodations that child needs to be successful at school. This is a good option to formalize accommodations that your child is already receiving for protection as the child changes teachers or advances in grade.
Preparing for the 504 meeting. The first meeting with district administrators is important in developing or redefining your relationship. Print out and carry with you the information in the link below to help give credibility to the accommodations you need for your child at your 504 meeting with school administrators and teachers. Consider emailing a link to this page to the school principle prior to the meeting. You can also use that page to make a list of accommodations that would be helpful for your child specifically. Our list is below.
504 plan for primary/secondary school
Letter to School Nurses about POTS
If you have trouble negotiating with your school district, look into the federally funded Parent Training Information and Information Centers. For information about what they do, check out the Resources for Parents. For a center near you, click this link Center for Parent Information and Resources.
For a comparison of the 504 and an IEP (individual educational plan), click here.
Online Kindergarten - High School Education
For children and teens that physically cannot attend a brick and mortar school, there are several FREE options online that will allow them to progress through their education. These are full time schools that are paid for by your tax dollars when you enroll (the money going to the brick and mortar school is diverted to the online public school of your choice).
If you are homeschooling, using a tutor, or partially home bound, you might find the resources of the Khan Academy to be helpful. It is a free unlimited access resource with excellent videos for learning a wide variety of subjects. They provide units in math, science, art, computer programming and so many more. In addition, they have videos for test preparation for the SAT, MCAT, NCLEX-RN and many others.
Accommodations for College
The rules for college are different from those for K-12 education. Like high school, colleges are required to provide appropriate accommodations as necessary to ensure that no discrimination on the basis of disability. You can create a 504 at your college that lays out the accommodations that will be needed to ensure success. This will be coordinated by the college’s disability office, and should be done before classes begin.
Your 504 may include a variety of services, as well as modifications to academic requirements as necessary to ensure equal educational opportunity. Examples include priority registration, reducing the course load, excused absences without penalty, substituting one course for another, providing note takers, extended time for testing, and a single final exam each day. You might want to include wording related to likely absences due to illness. In providing an academic adjustment, the college is not required to lower essential requirements. For example, although your school may be required to provide extended testing time, it is not required to change the substantive content of the test. In addition, colleges do not have to make adjustments that would fundamentally alter the nature of a service, program, or activity, or that would result in an undue financial or administrative burden. Finally, colleges do not have to provide personal attendants or other services such as tutoring and typing.
In college, faculty members have considerable autonomy in their classrooms. In most places, a letter is written by the disability office and sent to each faculty member teaching that student that semester. Most faculty members are quite accommodating and will fulfill the requests of the student, but they have the right to decline particular accommodations that infringe on their academic freedom, like releasing notes or PowerPoint presentations. It is critical that the student speaks with their faculty members at the very beginning of the semester. Faculty who are kept in the loop are much more likely to be understanding and help you when you miss class.
There is so much more that is involved in college than just academic classes, however. You might need accommodations in the residence hall as well. Students with disabilities have the right to comparable, convenient, and accessible housing at the same cost as other students.
You might also consider purchasing medical tuition insurance. Many colleges partner with a specific insurance company that can reimburse you for lost tuition and/or room and board for unused time when your child withdraws for medical reasons. It can be well worth the money.
For a list of the 50 best disability friendly colleges, please click here.
For additional resources, please visit the following links.
Pacer Center: Children with Disabilities
Financial Aid for Students with Disabilities
You might consider college tuition insurance for your child who attends college while dealing with chronic illness.
Scholarships for College Students with Serious Medical Issues
The Orion Fund This is available for students under age 30 who live in California and want to attend college. Grants range from $300 to $3000.
Disability Scholarships This site lists opportunities for students with a wide variety of disabilities. There are opportunities for large and small scholarships.
College Grants for Disabled Students Scholarship and federal grant opportunities for students with disabilities.
Online College Coursework or Materials
There are a variety of opportunities to increase your education or learn new skills online. These websites provide FREE educational opportunities that you can use at your own pace at home. This can be useful in vocational rehabilitation, if your illness necessitates a change in your line of work. Try these until you find something that you like. You don't have anything to lose, and a lot to gain!
Coursera FREE for many courses. A world of online college classes, including an MIT or Stanford education for free...but without the diploma.
edX FREE. Over 500 courses from a wide variety of colleges and universities. Choose something that is interesting to you and get started!
University of Fashion FREE or monthly/annual subscription. This is great for anyone looking to learn all about fashion design. The school comes to you at your convenience and works on any device.
Excelsior College Cost involved. This fully accredited university will take life credits, exam credits, courses form other accredited schools and its own courses and exams to give you a wide range of degrees.
US News and World Reports: Best of Online Degrees If you decide to invest in an online college, check out their reviews in US News and World Report first.
Computer Programming
Linux Foundation FREE. Linux is the computer operating system used by the Internet. Many online jobs require knowledge of Linux. The skills needed can be learned from books and free courses.
Codecademy FREE. This course teaches about web design and making your own apps. Many companies are looking for people who can do these things!