Please share your comments, stories, and ideas! I’d love to hear about your experiences dealing with a chronic illness in schools. Did you get the help you needed from the school? Did your school “get it?” Do you think anything needs to be improved on the treatment of students with chronic illnesses in their schools? — Rachel
Aiming for an Equal Education…Despite Our Illnesses
A growing number of students have chronic illnesses. If you count all types of chronic illnesses, at least 10 to 15 percent of American kids have been diagnosed with them, according to the National Institute of Health. Nine percent of children ages 5 to 17, have one or more chronic illnesses that limit their activities to some extent (2012, Childstats.gov ).
What are chronic illnesses? A chronic illness often has no cure and usually lasts a lifetime. Though some chronic diseases shorten people’s life spans, modern treatments have allowed people with many chronic conditions to live long lives. Chronic illnesses can go into remission or flare up, but they don’t usually go away. A few examples from a much more extensive list include: Crohn’s Disease, migraines, sickle-cell anemia, diabetes, AIDS, rheumatoid arthritis, epilepsy, chronic fatigue syndrome, asthma, multiple sclerosis, and heart disease. While chronic illnesses can be quite serious, they are not always noticed by others; people may have serious health problems and still “look fine.” For this reason, the term “invisible illnesses” has been used to describe their nature. Though some chronic illnesses are associated with cognitive disabilities, most are not; so students will vary in their learning abilities and cognitive skills, just like the rest of the population.
Going to school with a chronic illness can be challenging. Students might be dealing with painful and uncomfortable symptoms, need to take a lot of medicines, eat a special diet, or get tired easily. Some may need to have medical procedures, surgeries, or be hospitalized on occasion. Their symptoms may be dull and ever-present, or come on suddenly and acutely without warning. Their illnesses can take an emotional toll as well: students might feel embarrassed about their symptoms around teachers and classmates, angry or depressed about their illnesses, or scared that they will not feel well in school. It can be difficult for students to keep up with school work when they are not feeling well.
Adding to the challenges these students are dealing with is the frustration that their teachers and school administrators do not always understand what they are going through or how to help them get an education. When my older son was diagnosed with several chronic illnesses starting at age 10, we were unprepared for the level of misunderstanding we encountered from some teachers and school administrators. My son has Crohn’s Disease (an autoimmune disorder of the digestive tract), primary sclerosing cholangitis (a progressive autoimmune disorder of the liver), and migraines with auras. We encountered resistance to the accommodations he needed to take care of his health and keep up with his school work. Several of his teachers questioned whether he was “just being lazy” since he didn’t “look so sick,” despite notes from doctors testifying that he was indeed diagnosed with serious illnesses requiring accommodations. We were surprised to find guidance counselors who were misinformed about the laws that govern the treatment of students with disabilities, including the subset of chronic illnesses.
As we began meeting other families, we found that we were not the only ones who were frustrated, confused and surprised at the level of misunderstanding, and indeed, discrimination, our children with chronic illnesses were facing in schools. This is not to suggest that there is a malicious intent; rather, it reflects a subtle yet pervasive problem with the way our society views chronic illnesses and those who have them. Adding to this, is that teachers may find themselves struggling with how to help their students with chronic illnesses without enough training or resources–helping students with chronic illnesses can be complicated and tricky.
Despite the problems students currently face in schools, I am optimistic that we can reduce discrimination and help students get what they need more easily. Perhaps it will take some teacher training about chronic illnesses. Or perhaps our civil rights laws need to be more accessible to students and their families, so they know what their rights are and how to seek help in schools.
Misperceptions about Students with Chronic Illnesses
When I was diagnosed with ulcerative colitis (an immune disorder) and migraines with auras, and later, when both of my sons developed various chronic illnesses in their elementary school years, our well-intentioned friends came to us with their sympathies and a host of information about what they had heard caused and cured our illnesses. At the risk of offending these well-intentioned friends, much of what they told me was pretty sketchy. Far too much of the information circulating comes from unreliable sources, old-wives tales, and rumors passed around so long that they are accepted as truths. The lack of understanding about chronic illnesses is unexpected, considering how many people have them. Yet, I have to admit that even I have been guilty of holding some misperceptions, particularly before my kids and I developed illnesses ourselves. Chronic illnesses are complex, and there is still a lot to learn about what causes them, how to best treat them, and why the symptoms and outcomes can differ from person to person.
The misperceptions that circulate around our society influence the way teachers and school administrators view children with chronic illnesses. Misperceptions can greatly affect whether children are given the accommodations they need, and for which they are entitled to, under federal laws protecting students with chronic illnesses. (Section 504 of the Rehabilitation Act and the Americans with Disabilities Act).
The following are some misconceptions we need to dispel if we are to help our students:
1. If You Don’t “Look” Sick, then You Aren’t Sick
When a teacher finds out he will be teaching a student with a chronic illness requiring special accommodations, he might anticipate his student will be in a wheelchair, walk with a limp, or have tubes and equipment attached to her body. Some people with chronic illnesses do need equipment or have visible symptoms, but many more do not. Though people may be very sick they often do not have noticeable symptoms. For this reason, chronic illnesses have been referred to as “invisible illnesses.” I met a young man who had a serious autoimmune disorder of the liver (Primary Sclerosing Cholangitis). This young man’s liver was deteriorating and he was on a waiting list for a liver transplant. His situation was quite serious and life threatening. But, on the outside, he looked fine. Some symptoms common to PSC include abdominal pain, itching, and fatigue—which are not particularly visible to others.
Confusing things even further, many chronic illnesses have periods of health or remission and times when the conditions flare up. They can also be episodic in nature—like with migraines. Migraine episodes can be extremely debilitating, and in some people, the symptoms can go beyond a severe headache, include nausea, vertigo, loss of hearing, and loss of speech. But between episodes, the person recovers completely.
It is very important that teachers understand how serious and real the symptoms of a chronic illnesses can be even when they are not visible. When a teacher tells a student he doesn’t “look” sick, it can sound to the student as though his teacher doesn’t believe him. The skepticism is hurtful, and can also lead to withholding the help a child needs in school.
2. A Specific Illness is the Same in all People
Nearly everyone diagnosed with a chronic illness has been told something similar to this: “Oh, you have [insert illness]?” My friend’s son has the same thing. He just takes some medicine and is doing very well. It’s not that big a deal for him.” The punch line is usually left unsaid, out of politeness: “why are you making such a big deal, then?” The assumption that all people suffering from the same illness have the same symptoms, outcomes, and responses to treatment, is absolutely not true. The same disease can vary widely from person to person. What might be a minor problem in one person may mean several surgeries, hospitalizations, or chronic pain in another.
The intention of comments comparing two individuals suffering from the same illness, are at times meant to reassure people that they will be fine. At other times, it is more accusatory, insinuating that they are exaggerating their medical problems to gain sympathy or to benefit from accommodations they don’t need. Whatever the intention, telling someone that their illness isn’t a big deal can come across as dismissive and patronizing. A friend of mine has a daughter with cancer who is taking chemotherapy treatments. She gets serious side effects from the treatment often requiring her to be hospitalized. My friend spoke to her daughter’s teacher about her condition. The teacher responded that she knew another child with the same form of cancer, who was never absent due to treatments. The teacher expressed her skepticism to my friend, insinuating that her daughter was exaggerating her symptoms to get attention and to be excused from doing her work.
3. It’s Your Fault that You are Sick
It is common for others to blame people with chronic illnesses for being sick. The assumption is that they must be doing something wrong—too much stress, a bad diet, not enough sleep, not enough exercise, etc. First, let me be clear that scorning someone for being sick, regardless of the influence of lifestyle on their illness, is absolutely wrong and discriminatory. Additionally, chronic illnesses are complex, and can be affected by several variables, including genetics and environmental factors, which are not yet fully understood by the medical community. Lifestyle choices are but one variable, affecting some illnesses more greatly than others. Of course, taking good care of ourselves is likely to produce the best outcomes possible. But we also all know people who take particularly good care of themselves, and developed serious diseases. Others have less than perfect lifestyles, and never develop a chronic illness. There is still a lot we do not understand about chronic illness and why they develop in some people and not in others.
One example comes to mind that I think illustrates the point about how little we understand about so many chronic illness, and how unfair and hurtful it is to blame people for their illnesses, even if we think we understand their causes. Until the 1990’s, people suffering from stomach ulcers were told that they had created the ulcers from having too much stress and lousy diets. They were told to stop drinking coffee, and meditate. For sure, these lifestyle changes were likely to relieve symptoms somewhat, but it was discovered in 1982 that the culprit of the majority of stomach ulcers is the h. pylori bacteria. According to the National Institute of Health, taking antibiotics has become the cure for more than 90 percent of stomach ulcers.
Regardless of the influence of lifestyle on chronic illnesses, it is absolutely wrong to discriminate against people who are sick. You can’t deny a student the support he needs to get an education, because you think he should eat a better diet. Our society is best when it protects its entire population and gives everyone equal opportunities.
4. Accommodations Keep Kids from Learning how to Deal with Challenges
This is the tough love argument. It tells kids who are sick that the world is filled with discrimination so they better just get used to it, because no one is going to help them when they get out of school. The school principal and guidance counselor gave me this argument when my older son, Aaron, was in middle school. They told me Aaron should learn to live with some challenges and not seek accommodations in school. At the time, I thought this view was an anomaly, from a particularly ignorant pair…until I spoke with other parents whose children were in different schools, and discovered it was more widespread.
I would argue that students with chronic illnesses are already coping with a lot more than their peers, and many develop a level of strength and maturity unknown to kids who have not suffered in some way. The school does not have to pile on more barriers to teach them a lesson on coping with life. When students have chronic illness, they often have to work harder to keep up with their classes, while coping with physical pain and the uncertainty of whether they will be well the following day. They need to cope with going to school with uncomfortable and perhaps embarrassing symptoms, all the time trying to lead as normal a life as possible, and trying to think positively.
The accommodations mandated in federal laws protecting students with chronic illnesses against discrimination (Section 504 of the Rehabilitation Act and the American’s with Disabilities Act), are intended to provide an even playing field for students. They are not getting accommodations that give them an advantage over other students.
There are legitimate worries that protections in the workplace are weak for people with chronic illnesses, so students are likely to face some additional challenges when they enter the workforce. But, hopefully, they will be given the support and accommodations they needed in school, so they will be armed with a good education and skills. Additionally, I’d argue that the solution to the disparity between anti-discrimination protections in schools compared with the adult workplace is to improve anti-discriminations laws in the workplace, rather than rolling back the laws that exist in schools.
Aiming for an Equal Education
Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA) of 1990 were breakthrough laws that represented a significant leap for the civil and human rights of people with disabilities, including those with chronic illnesses. For students, these laws meant that their schools were obligated to provide them with an education equal to their classmates. It became the responsibility of schools to provide individualized accommodations that addressed the health and educational needs of students with the aim of leveling the playing field in education.
Yet the situation is far from perfect, mostly because of the inconsistent implementation of these laws in schools. Some teachers and school administrators understand these laws well and know how to implement the accommodations required for their students with chronic illnesses. Other schools don’t get it at all, with a wide range of experience in between. As a result of misunderstandings about the laws, and misconceptions about chronic illnesses, far too many students with chronic illnesses are denied equal access to education or a safe environment considering their medical conditions.
The following are some problems students with chronic illnesses have encountered in schools. The existing laws have already solved for all the issue that follow. The problem is not in the laws, but rather in their inconsistent implementation:
1. Discrimination in the Admissions Process
Schools are not allowed to deny admission to students based on the presence of a chronic illness, and they are not allowed to use attendance records against students who prove their absences were due to illness. Schools that are selective, however, are allowed to deny admission due to truancy that is not excused by medical issues or another excusable situation. It appears some schools are unaware of the distinction between truancy and excused absences, and are either unaware of or knowingly violate the laws protecting students with disabilities from discriminatory admissions policies.
I witnessed the violation of school admissions laws when my son, Aaron, was applying for high schools. In New York City, where we live, public school students must apply to high schools for admission. When Aaron was in 8th grade we attended a high school fair, hoping to find a school that would combine great academics with sensitivity to his chronic health issues. The schools were at first impressed by Aaron’s strong academic record, and expressed interest in having him apply to their schools. We then disclosed that Aaron had chronic health issues that require some accommodations and had caused frequent absences. We felt it was necessary to have this discussion with the schools before Aaron applied, because we were looking for a school that “got it.” With this disclosure, schools rolled up their welcome mats. We were told that they used attendance records as criteria for admission, and believed that their school was not the right fit for a student with frequent absences. This reaction became predictable table after table. Even schools that were not selective and therefore did not require academic or absentee records for admission discouraged our son from applying. No one wanted to bother with a kid who had chronic illnesses. We were shocked. Had these school administrators not read the bold print on every other page of the NYC High School Directory in every visitor’s arms, stating the anti-discrimination policies of the district? They appeared to be either ignorant or deliberately dismissive of the laws providing equal access to education for students with disabilities.
After much discouragement, we approached a school Aaron was particularly interested in attending. When a teacher, predictably, started to tell us that absences would be a problem, we told her that this was the reaction of every school represented at the fair, and expressed our frustration at the lack of humanity, not to mention the blatant disregard for federal law we had faced all day. She paused and then said, “You know, you’re absolutely right.” Finally, we had found a school that might not have “gotten it” at first, but was willing to learn and work with us. Aaron now attends school there, and the teachers are doing a fantastic job with him. He made the high honor roll despite his continuing health problems.
2. Punishment for Frequent Absences
Schools don’t like students to be absent. Neither do students or their parents. I think we can all agree that students benefit the most from their classes when they attend regularly. Those who are ill would much rather be in school learning than suffering at home or in a hospital bed. They need schools to provide them with a way to keep up their studies when they are unable to come to school, rather than threats and reprimands for frequent or prolonged absences. Unfortunately, the latter is too often the case.
There are instances where students who have frequent absences have been denied credits for classes, have been denied promotion to the next grade, or have had their grades reduced arbitrarily, with little regard to academic achievement. One parent sought advice from Wrightsway Law, an online legal advocacy group for special education, when her daughter was told she would not receive credits for her classes, despite receiving A’s and B’s, because she had frequent absences due to documented illnesses.
Federal laws, however, prohibit such treatment. The laws state that students with excused absences due to a “qualifying disability” (chronic illnesses included), must be given credit for their classes, providing a passing grade has been achieved. Rather than requiring students to repeat classes, it is the school’s responsibility to do everything it can to help students progress regardless of their health conditions—including providing tutoring at school or at home when necessary, providing access to lecture notes or recording classes, to name a few examples.
There are situations where students are dealing with such acute health issues, that they cannot complete school work for a period of time, no matter what resources the schools provide. In those cases, students will likely have to take a leave of absence until they are well enough to return. In these situations, students should be able to resume their studies at whichever level they were at before the absence, and retake classes they did not complete without impacting their grades.
3. Barriers to Accessing Class Content
Schools often ask their students to copy class notes and handouts from classmates when they are absent from school. This policy is adequate for students who are absent infrequently. But some students with chronic illnesses may be away from class often or for extended periods of time, and need more consistent access to lecture content and handouts. According to the laws regarding disabilities, schools must provide their students with an equal education to those of their peers, including access to class materials and lessons. It is important for the schools to provide all the materials without requiring the student to jump through hoops to get it.
When my son, Aaron, was in middle school, he had just been diagnosed with 3 chronic illnesses, and had symptoms that were still out of control. The teachers told him to follow the school policies and get his class notes and handouts from classmates. The school administrators agreed with the teachers, saying that it would be too much trouble for the teachers and the school to provide Aaron with class materials when he was absent. They also felt that Aaron had to learn to cope in a world that would not “baby” him. The teachers did not seem to understand how sick he was despite our explanations and doctors’ notes—he didn’t “look” sick, so they thought he was just lazy. So, Aaron was expected to copy notes from classmates, and go door to door to each of his teachers to get copies of handouts. Some teachers would be too busy during class to provide handouts or explain a lesson that was missed. So teachers would often tell him to come see them later. Yet the teachers were not always available when he went to see them. Sometimes their doors would be locked, or the teachers would say they were busy with other students. Classmates were reluctant to lend their notes, since Aaron was not always careful with them; he was a 12 year old boy, after all. Aaron eventually stopped trying to get the class materials.
After several months of this we did some research and contacted a social worker at the hospital where Aaron was treated. This is when we discovered the laws protecting students with chronic illnesses. We requested a 504 plan for our son, and forced the school to comply with the law. Now the school was responsible for getting Aaron his class notes and handouts in a way that was easily accessible. With a system in place, the school discovered that it was not such a big burden on them as they expected, and Aaron was given the materials he needed to keep up with his lessons.
4. Denying Medically Necessary Accommodations
Students with chronic illnesses often need accommodations in school to take care of their health issues. If a student has diabetes, he may need to eat a snack during class and have easy access to his medicines. A child with ulcerative colitis may need unlimited use of a bathroom and a drink to sip in class to avoid dehydration. A child with asthma must have quick access to an inhaler, or may need a break during physical activity. Sometimes, the needs of students can be inconvenient and cannot wait to be addressed. A class may be taking a test when a student needs to run to the bathroom, develops a migraine, experiences low blow sugar, or develops severe abdominal pain.
In my own experience, I have found that most teachers are accommodating of children’s medical needs in schools. They want their students to be safe and not suffer a dangerous effect in school. However, there are plenty of cases where teachers have either outright denied an accommodation or have not adequately implemented a needed accommodation. This is particularly true when the teachers did not understand the students’ medical needs, or the needs were difficult to accommodate for. I don’t assume these teachers wished to hurt or punish their students, but most likely did not have proper training in how to deal with their students with various illnesses. Schools need to provide such training to their teachers. When a student’s health needs are not addressed adequately in school, the consequences could be quite serious.
I am aware of several cases where teachers have been negligent in allowing their students necessary accommodations. One example involves unlimited bathroom use by students with ulcerative colitis and Crohn’s disease. These students were denied bathroom passes because their teachers thought they were using the bathroom too often. Both of these diseases can cause sudden, urgent and frequent diarrhea, sometimes accompanied by intestinal bleeding, that cannot wait for a more convenient time. When these diseases are active, some people have dozens of urgent trips to the bathroom in a day. (It’s Too Hard to be Sick in America, by Jeniffer Jaff)
There are also potentially life-threatening situations involving students with food allergies. In another case described by Jeniffer Jaff, a young student with severe allergies to peanuts, dairy, and eggs, required an environment completely free of these foods. Even food residue on a table or toy could make this child suffer a reaction. The teacher had difficulty meeting the child’s needs, and chose to segregate the child during snacks, and send him home when there were class activities including the foods he was allergic to. The teacher was also allowing students to use hand sanitizer instead of washing their hands with soap and water after eating, which does not wash off the allergens. The school was obligated under the law to provide a safe environment without segregating the child. It is understandably a difficult task, but there are creative solutions in place in schools to deal with food allergies. In fact, with the help of a patient advocate the parents contacted, better solutions were found to help this child. For example, the school started wiping down tables and toys in the classroom every night, and made celebrations in school that did not involve food, so the child would not be excluded. The parents did concede to having their son eat lunch and snacks with a paraprofessional in another room, as a necessity.
In another case, a 16-year old student with type I diabetes had his insulin pump, that was attached to his thigh with a tube, ripped out by a substitute teacher. The teacher heard the pump beeping and assumed it was a cell phone. In fairness to the teacher, he did not know this was a medical device. However, it is important for teachers–especially substitute teachers who do not know the students well—to be educated and aware that some of their students may need medicines or have medical devices. It would have been more appropriate for the substitute teacher to ask the student what was making the beeping sound, before pulling the insulin pump away (Orlando Sentinel).
6. Inflexible Policies for Assignments and Exams
Students are likely to come across teachers in their school careers who do not want to hear excuses for handing in late assignments. If you are absent, you are to email the complete assignment–so there is no excuse for handing the work in late. Some teachers do not want to postpone exams so students with prolonged absences have time to get tutoring and learn the material. Yet, under the guidelines of providing an education free of discrimination, teachers must allow the flexibility necessary for students with chronic illnesses to obtain an equal education. That does not mean a student has more time to complete assignments or to study for exams than other students; rather, the student is given the same time to study and complete assignments, after factoring in time lost due to illness, and time needed to attend tutoring on the subject matter.
I knew a math teacher who had a student suffering from frequent migraines. He would deduct points for work that was not turned in on time due to the child’s absence. He also decided to take points off for class participation and classwork on the days the student was absent. The teacher admitted that this child participated fully in class when he was in school, and that he was consistent in handing in assignments as soon as he returned to school. The child was producing good work and doing well on exams. Yet the teacher arbitrarily lowered his overall grade, arguing that on days when he was absent, he was not participating in class, doing classwork, and handing his homework in on time. Never mind that it was impossible for him to participate in class when he was not physically there.
Laws Protecting Students with Chronic Illnesses
There are federal and state laws already in place that have been helpful in lessening discrimination in schools. These laws include Section 504 of the Rehabilitation Act of 1973, The Americans with Disabilities Act, the Individuals with Disabilities Education Act (IDEA), and a host of state and local laws addressing disabilities in schools. When there is discrimination, it seems to stem mostly from unfamiliarity with the content and application of the laws on the part of school administrators and teachers, rather than a deliberate attempt to violate federal and state laws.
Essentially, these laws put the responsibility on schools to make sure students with disabilities have all the resources and accommodations they need to get an equal education as students who are not disabled. If schools violate these laws, they are in danger of losing their federal funding, so the laws must be taken seriously. Built into Section 504 and IDEA, there is a means for students to develop plans with their schools that address their individual health and education needs. These plans include 504 Plans and IEPs (Individual Education Plans).
About the Laws…
1. Section 504 of the Rehabilitation Act of 1973
Section 504 provides protection against discrimination for “qualified students with disabilities,” who are attending schools that receive federal funding. “Qualified students” include those who “have a physical or mental impairment that substantially limits one or more major life activities.” “Major life activities” include a long list of functions. A small selection of these include “functions such as caring for one’s self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working.” This list was later expanded by the ADA to clearly include life activities covering most chronic illnesses. The law requires schools to meet the education needs of students with disabilities “as adequately as the needs of students without disabilities are met.” Section 504 applies to all stages of education, from primary school through college. Section 504 applies to all schools receiving any amount of federal funding, so it includes all public schools, and any private or religious schools receiving some amount of federal funding for their programs. 504 Plans originate from this law. (Federal Dept. of Education, Office of Civil Rights-OCR).
2. Americans with Disabilities Act (ADA) of 1990 and the 2008 Amendments Act
The ADA prohibits discrimination on the basis of disability in a wide range of places, including most schools. The 2008 amendments to the ADA were important in clarifying that the definition of “disability” includes chronic illnesses, even when the symptoms are episodic or are in remission and even if the symptoms can be mitigated with treatment. The amendment also expanded the definition of “disability” to include a wider range of impairments to “major life activities”, including “the functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions (OCR).” This list is only a sample of the many life activities covered under the law. Most chronic illnesses are now clearly covered under the federal laws protecting people with disabilities.Unlike Section 504, the ADA applies to both public and private schools, though religious schools not receiving public funds are still exempt. However, many states have filled the gap by adding their own legislation addressing disabilities in religious schools.
3. The Individuals with Disabilities Education Act (IDEA)
This law relates to students with learning or cognitive disabilities, and is not specifically for students with chronic illnesses. The law provides funding for special education services, and put in place the IEP. I list the IDEA on this site, because it is relevant to students who have both chronic illnesses and learning or cognitive disabilities. For students with chronic illnesses also requiring special education services, an IEP will address all needs, including accommodations required because of a chronic illness. No additional 504 plan would be necessary.
4. State and Local Laws
Many state and local governments have added their own legislation to the federal laws concerning students with disabilities. Local school districts have also added regulations that their schools must follow.
1. More and Better Training for Teachers and School Administrators
Some schools and guidance counselors are quite knowledgeable about the regulations pertaining to students with disabilities, including their students with chronic illnesses. They create 504 Plans for their students with ease and much success. My older son, Aaron, is now attending one of these schools that “get it.” Other schools don’t even know that students with chronic illnesses are covered by Section 504 and the ADA, and do little to help their students with chronic illnesses. Yet others fall somewhere in between these two extremes. I imagine school districts are providing their teachers and school administrators with some information and training on laws and regulations pertaining to students with disabilities. I have also seen some material and training workshops posted online geared toward teachers and administrators. Yet, many students and parents have discovered that whatever training exists has left too many schools misinformed and sorely lacking in their abilities to help students with chronic illnesses.
I witnessed this lack of experience in schools my children have attended, and have heard similar accounts from other parents. Before Aaron started high school in what is proving to be a wonderful situation, he attended schools that had much less experience accommodating students with chronic illnesses. In middle school, I asked the guidance counselor if she could help us put a 504 Plan in place for my son, who was diagnosed with Crohn’s Disease and Cyclic Vomiting Syndrome at the time. The guidance counselor told me that these plans were only for students who needed special education services, not for those, like my son, who had chronic illness but were doing fine academically—which I found out later, is absolutely not true! Accommodations are not dependent on poor academic achievement. At the time, I figured the guidance counselor was an expert at this and I didn’t know the regulations. So we continued to speak to my son’s teachers and pieced together the help he needed in school in an informal way.
The following year, Aaron was in another school, and had piled on his third diagnosis, this time it was Primary Sclerosing Cholangitis, a rare and quite serious immune disorder of the liver. By now, Aaron began to slip academically and was not getting the support he needed to take care of his illnesses and keep up in school. Once again, we found ourselves facing a guidance counselor who was unfamiliar with the details of how a 504 Plan applies to students with chronic health conditions. I did a bunch of research and negotiated the details of a 504 Plan with the principal, guidance counselor, and teachers. I contacted a lawyer at a nonprofit organization called Advocacy for Patients with Chronic Illnesses, to look things over and get advice. Things dramatically improved for my son with a formal plan in place.
As a result of insufficient training in schools, there are students with chronic illnesses who are not getting the support and accommodations they are entitled to. Meaningful training for teachers, guidance counselors and principals in every school, is essential if we are to help our students receive an equal education in an environment free of discrimination. School districts are constantly sending their teachers for training in just about everything else—some of this training time must be spent on educating school staff on how to help this population of students that is falling through the cracks.
2. Sharing Model Solutions for Teaching Students with Chronic Illnesses
Educating students with chronic illnesses can be quite challenging. How do you help a child who is often fatigued because of illness or medications? How do you help a child learn when she is in pain and can’t focus? How do you keep a child safe who has severe food allergies? How do organize a child’s learning when they need to step out of class frequently to use the bathroom, see the nurse, or take medicine?
I scoured the internet looking for model strategies schools have used to successfully help their students with various chronic illnesses. I was surprised that I didn’t find very many. Not that these strategies don’t exist, but they are difficult to find. It would help teachers to see what has worked in other schools to guide them through their similar challenges. If I had trouble finding solutions, I imagine teachers do as well. Maybe we can do a survey of schools and ask them to share their successful strategies.
Here are some potential models I found. Perhaps with more research and tips from readers, this list will grow:
- Posting class information using online websites like Edline to help keep up with their learning and classwork when they are absent. These programs can be used to post lecture notes, PowerPoint presentations, class assignments, videos and grades.
- Using teleconferencing software, or better yet, using a new robot called Vgo, to help students participate virtually in their classes when they cannot attend school.
- Allergy Ready is an online course for teachers and school administrators providing training to help students with potentially life-threatening allergic reactions.
3. Fixing the Woefully Inadequate Homebound Instruction Programs
The federal laws protecting students with disabilities insist that every effort must be made to provide students with disabilities an education that is not segregated from their peers. This rule has required schools to find creative solutions to difficult situations—like finding ways to keep kids in school with immune deficiencies or food allergies—rather than isolating them from other students. It is tricky to balance students’ health issues with their emotional and education needs, but schools must find a way, and many students have benefited from these wise laws.
There are times, however, when students are simply too ill to come to school. If this is a temporary situation, these kids are entitled to what is called “Homebound Instruction.” Teachers come to the students’ homes and teach them a curriculum that is coordinated with their regular class study. The idea is that these kids will be following the same lessons as their classmates in school, and will be able to step right back in to their classes with relative ease when they are well again. In reality, this goal is rarely achieved since most, if not all, homebound instruction programs are riddled with problems. Homebound instruction is broken, and these kids are falling through the cracks.
The federal laws do not mention homebound instruction directly, so each state has developed homebound instruction programs with their own rules and guidelines. An organization called Talk about Curing Autism provides a comprehensive list of every state’s rules for home instruction on their website. Each state is free to create laws that determine who qualifies for homebound instructions, the quality of their teachers, and how many hours each student can receive of instruction. Other than following the basic guidelines of providing a “Free and Appropriate Education (FAPE)” as required in Section 504, there is no federal regulation of homebound instruction, since the ADA and Section 504 are silent on the subject. According to JustChildren, an advocacy organization representing low-income children in Virginia, Homebound Instruction has serious problems “including inadequately trained teachers, watered-down curricula, scheduling difficulties, and gaps in coursework.”
I live in New York City, and experienced the same problems that JustChildren describes in Virginia’s homebound instruction program. My older son, Aaron, spent 4 months last year in homebound instruction. In New York State, where we live, there is funding for 10 hours of instruction weekly for secondary school, and 5 hours a week for primary school students. My son was in 8th grade, so was given 10 hours a week, which is generous compared to some other state programs, but still not enough hours for Aaron to keep up with the curriculum at his school.
The first teacher who came spent the short 2 hours allotted daily trying to indoctrinate my son into believing a conspiracy theory about the “Illuminati,” a secret society supposedly made up of the rich and powerful, who are the masterminds of 9/11, the Iraq war, the 2008 recession, and every other bad event in history for over 250 years. Every time I entered the room, the teacher would flip open a book and pretend to be teaching Aaron his actual school lessons. Aaron was shaken up, and I felt as though my kid, who was so sick at the time, had just been abused. We immediately asked for a new teacher.
The second teacher was better, though not great. He was good at teaching math, but fell easily into discussions about baseball, which he justified since there were 2-pages of baseball history in my son’s history textbook. Many precious hours were spent with Aaron and his teacher talking baseball. Still, it was better than conspiracy lady. I was required to be home when the teacher was present, which limited my schedule, but clearly, was absolutely necessary considering the quality of teachers sent to instruct in the home. Aaron learned very little, and the year turned out to be a waste. But being home helped him recover his health and he was ready to go back to school the following September. Luckily, Aaron was in an accelerated program…doing 9th grade work in 8th grade, so he was able to miss the year, and join his peers in high school, at a slower pace that was better for him anyway.
The situation was more serious for my friend’s daughter, who was also in 8th grade and home for a year-and-a-half while undergoing aggressive treatment for leukemia. She could not afford to lose out on this much time without studying. The first teacher assigned to her daughter would ring the doorbell, and bolt before anyone could answer the door. The next teacher was much better, and actually cared about doing her best! But 2 hours a day was not enough time to make it through the lessons taught in school.
There are so many similar stories…Another student in Aaron’s class was hit by a car and spent several months in the homebound program. When she came back, Aaron said it was as if she had learned nothing since she left school. The problem with homebound instruction programs has gone on for a long time. I have another friend who experienced homebound instruction for a month or two when she had mono in high school decades ago. She said the teacher was pretty bad, and the instruction time was too short for her to keep up. These stories are echoed all over the country by students and parents sharing their frustration in online discussion forums like the one on The Wrightslaw Way which is on a site created by a law firm that specializes in special education issues. The homebound instruction programs are clearly broken all over the country, yet these problems and our sickest students are hidden out of sight and forgotten. Most people don’t even know there is a homebound instruction program.
Homebound Instruction must change. I think it would help if there was more regulation of the programs at the federal level, and better oversight of the teachers. Despite our complaints and those of other parents about specific teachers, we got the sense that there were no investigations or disciplinary actions…the teachers were simply reassigned to other students.
Homebound Instruction must also evolve to incorporate creative use of technology to connect students directly to their classrooms and their classmates. How about using video-conferencing software and providing class materials, lecture notes and assignments online? There is also a new robot that a couple dozen homebound students are testing, called Vgo, which could truly revolutionize homebound instruction. The robots cost $6,000 each, with a $100 per month service fee. Using Vgo, homebound students can participate in their classes virtually. The robot is 4 feet tall and has wheels. The student operates the robot remotely, and can follow her class around a school building, and can speak to her classmates and teachers. Every school could own a couple Vgo robots to help students when they are stuck at home for extended periods due to injury or illness.
4. “504 Plans, IEP’s, and Your Rights in School: A Guide for Students with Chronic Illnesses” Pamphlet Distributed to all Students with Chronic Illnesses
As far as I know, this pamphlet doesn’t exist yet. But it should. Many of us who are in school with a chronic illness or who have young kids with health issues are left to find all this information on our own. In the meantime, students suffer in school and parents drive themselves nuts dealing with school issues without enough guidance.
Yes, there are versions of this information provided by various organizations—government agencies, nonprofits focusing on specific medical conditions, advocacy groups for people with various disabilities–but they aren’t being distributed widely, and I have yet to come across information that is comprehensive and universally relevant to all students with every type of chronic illness. Providing one single pamphlet in doctor’s offices and schools would assure consistent and widespread information that every student with a chronic illness should know; not just the ones with a better-funded illness, or those who have joined organizations with good outreach.
When Aaron was diagnosed with Crohn’s Disease, the first of three chronic illnesses that would surprise us, we had no idea what a 504 Plan was. We had heard of the American’s with Disabilities Act, but thought the law was meant to address the rights of people who were in a wheel chair or needed other equipment to get around and to communicate. Our son’s doctor handed us lots of useful information about Crohn’s Disease and about the Crohn’s and Colitis Foundation of America, but nothing about 504 Plans. When we told the teachers and the school nurse about our son’s new diagnosis, there was no call from the guidance counselor letting us know he was entitled to accommodations in school and that it would be helpful to initiate a 504 Plan. Aaron went to school and we dealt with his needs informally with all his teachers. Nothing was coordinated, and Aaron was struggling with his health while trying to keep up with school.
Nearly a year later, I went to my first parent support group at the hospital where my son was treated for Crohn’s Disease. By this time, he had also developed a rare migraine variant called Cyclic Vomiting Syndrome, and the Crohn’s symptoms were still active. At this meeting, I heard other parents talking about 504 Plans, and how necessary they were for kids with Crohn’s Disease. Why hadn’t I heard of this before?
Speaking with other parents I found that our experience was not unique. Several of them had no or only partial information about the rights their kids were entitled to in school by law, and or how to develop a 504 Plan. It would have been much easier for all of us if a doctor or a guidance counselor had handed us a brochure with information on the rights of students with chronic illnesses and offered to help us develop a plan for our kids in school.