Educating Students With Chronic Illness

Statistics show that chronic illness is rising among all age groups, including students. Last month I mentioned in my blog some new research that supports this, and the problem that poor health is associated with students dropping out of school.

My colleagues Ann Fantauzzi and Paula Leitz and I have become increasingly concerned about this situation as we personally see the impact that chronic illness has on the education of young people we know through our professions. Ann is a former teacher and now a teacher mentor, Paula is a professor focusing on teacher training, and I treat a number of youth with chronic conditions, including cancer and fibromyalgia, in my clinical practice.

One of the biggest problems we see is that the school system is well accustomed to accommodating children with acute and/or short-term disabilities, like broken arms or legs, and traditional disabilities, like visual or auditory impairments. But they don’t do as well accommodating students with chronic relapsing-remitting conditions like cancer, multiple sclerosis or chronic fatigue syndrome, for example.

Although federal disability laws require schools to accommodate students with disabilities, we have found that school personnel, including administrators, teachers, principals and others, often need to be educated about the unique nature of chronic relapsing-remitting conditions. It can be confusing to see a student alter between periods of relatively good health and extreme weakness and disability, and the flexibility required to accommodate these students can be difficult to achieve in the stressed American school system.

What seems to work best in these cases is a combination of established pedagogical techniques, notably differentiated instruction, and chronic illness models, such as the Fennell Four-Phase Model.

Chronic illness models, including the Fennell Four-Phase Model (FFPM), address the universe of issues and concerns facing students and families with chronic conditions. FFPM outlines Four Phases that people commonly pass through as they learn to incorporate their altered physical abilities or psychological outlook into their personality and lifestyle.

Differentiated instruction is designed to accommodate the varying learning needs of students, whether they are gifted, learning disabled, chronically ill or typical. Differentiation allows teachers to provide high-quality learning opportunities while engaging each class member at his or her own level. Differentiation is also validating for students. It presents curriculum in a way that is relevant to their lives and helps them make connections between concepts, which in turn helps them to retain new ideas.

Overall, differentiated instruction gives the student more control over their own work because it is set up cooperatively with the teacher, and provides educators a greater sense of management and choice of outcomes for individual assignments.

By blending the FFPM approach with differentiated instruction, educators can develop individualized approaches to teaching students with chronic conditions that meet the students “where they are.” By using FFPM to take into consideration the medical, social, familial and psychological situation the student is facing, educators can use differentiated instruction to develop curriculum and assignments that are relevant to the student’s life, interests and abilities.

We’ve found that combining these approaches offers students a greater opportunity to maintain their education while coping with the relapsing/remitting nature of chronic illness.

More on Crime, Trauma and the Four-Phase Model

In a recent blog post, I mentioned that David Kaczynski, Gary Wright and I were on Northeast Public Radio discussing crime and long-term trauma. This is a topic I’ve been working on a lot recently, and one I wanted to explore a bit further in my blog.

In February, David and I spoke to the good people at the Mental Health Alternatives to Solitary Confinement Coalition, meeting at the Urban Justice League in New York City. This group is working to gain appropriate psychiatric care for inmates with severe mental illnesses. We talked about how the Fennell Four-Phase Model (FFPM) can describe the universe of trauma that emerges from violence and crime.

When we talk about violence, we naturally think about the victim’s experience of trauma — how is that person coping with what has been done to him or her? However, for the good of our community, we need to recognize that violence and crime can cause trauma in all parties involved in a crime — the victim, of course, but also family and close friends, but also the perpetrator, his family and friends, and even the law enforcement community which is trying to bring justice to the situation. For example, families of perpetrators are frequently traumatized by the impact of what their loved one has done to harm another. In addition, many criminals have been victims of trauma before they turn to violence.

FFPM describes the phases that any of these parties experience due to long-term trauma. It doesn’t pass judgment on any of the parties – it is a values-neutral, systems-based approach that understands that trauma is painful for all parties in different ways. It acknowledges that trauma-related symptoms change over time and in response to different experiences and circumstances.

It recognizes that if trauma isn’t treated, it is likely to be repeated.

People who have long-term trauma go through four predictable phases. In Phase 1, Crisis, the person is trying to contain the urgency and focus on the things that are necessary to cope with day-to-day life. In Phase 2, Stabilization, the person is carving order out of chaos and developing new norms. In Phase 3, Resolution, the person establishes an authentic new self and develops a supportive, meaningful philosophy. And, in Phase 4, Integration, the person appreciates that the experience is part of his or her life, but not something that defines him or her.

Once we have assessed the person’s Phase we can implement targeted psychiatric, physical and behavioral treatments to help them progress to the next level on the pathway toward Integration. And, by continually assessing and taking into consideration the impact of life events on the experience of trauma, we can limit regression into earlier Phases during times of greater stress.

When we view crime in light of the long-term trauma and Phase model, we open the door to resolution and healing, and development of a safer, more just society.

The Rise in Childhood Chronic Illness: Impacts on Education

On March 6 I’ll be in San Antonio presenting at the Association for Supervision and Curriculum Development conference. My colleagues Ann Fantauzzi, Paula Leitz and I will be talking about ways to educate students with chronic illnesses, as we did a couple of weeks at the American Association of Colleges for Teacher Education in Atlanta.

As more students come to school with chronic conditions like diabetes, asthma, autism, and autoimmune diseases, as well as diseases precipitated by the rise in childhood obesity, this issue will grow in importance. A recent study in JAMA reported that chronic illness in young children — ages 2 to 8 — doubled in just 12 years, to 1 in 4 children in 2006, up from 1 in 8 in 1994. Students with chronic conditions are at higher risk for school absenteeism and drop-out. In addition, dropouts are more likely to suffer from illness or disability in adulthood.

Clearly, chronic illness has serious impacts on schools, teachers, families and students, as well as our nation. It’s crucial that we find solutions to the problem of chronic illness and student absenteeism and dropout.

For more information about the rise in childhood chronic illness, see:

New York Times

WebMD

An Interview on Long-Term Trauma and Crime

On December 11, David Kaczynski, Gary Wright and I were guests on the popular and respected “Alan Chartock… In Conversation With” program on Northeast Public Radio.

We talked broadly with Alan about long-term trauma, particularly the mental and physical health symptoms often experienced by people involved with a crime. We discussed how crucial it is for those impacted by violence — including victims, offenders, their children, partners and families, as well as law-enforcement and other professionals who work with crime victims and offenders – to heal from the loss and trauma they experienced so that they can go on to live full lives.

We also talked specifically about the experiences of David, brother of Unabomber Ted Kaczynski, and Gary, one of Ted’s surviving victims. In 1996, David and his wife, Linda, made the difficult decision to approach the FBI with their suspicions that David’s brother might be involved in a series of bombings that caused three deaths and numerous injuries over 17 years. David and Gary have forged a close bond through the experience of working to recover from their individual traumas, a friendship that has enriched both of their lives.

The interview has recently been posted on the WAMC/Northeast Public Radio Web site, and I hope you’ll take the opportunity to listen and let me know what you think.

Alan Chartock… In Conversation with David Kaczynski, Gary Wright and Patricia Fennell, 12/11/09

XMRV and Chronic Fatigue Syndrome

I wrote the commentary below in October 2009, when news of an association between the retrovirus XMRV and chronic fatigue syndrome first broke. With the topic back in the news this month, due to a new report from the U.K. which didn’t find this association, I thought it would be informative to share my original remarks on my blog.

The report of an association between the retrovirus XMRV and chronic fatigue syndrome (CFS) is extremely exciting. As someone who has been treating CFS patients for 20 years, I have been avidly following these reports and I congratulate the Whittemore Peterson Institute, Dr. Judy Mikovitz, and their colleagues on this important finding. I look forward to learning more about this breakthrough as they continue their vital research into XMRV, CFS and treatments for it.

I do think it’s important to acknowledge that science moves slowly and, no matter how long you have been ill with CFS, it will never seem like science is moving quickly enough. This illness robs patients of so much – not only their health, but also their livelihood, predictability, social connections, security, self esteem and other fundamentals.

The scientists are working diligently, as they have for more than two decades, to unravel the mysteries of CFS and develop effective medical treatments for it. As they persevere with this new avenue to explore, we must continue taking care of those who suffer the effects of CFS – not just the patients, but also their families and loved ones who have also seen their lives change in so many significant ways.

As I have listened to my patients talk about XMRV in recent weeks, I have heard them express many emotions – first hope and excitement that scientists are closer to finding the answers that will return them to health, but also anger that so much of their lives has already been stolen by CFS, and concern over the potential implications of having a virus-associated illness. Change, even positive change, often produces new questions and stresses that we may not have considered before. We at Albany Health Management Associates are glad to be helping our patients and their families navigate more smoothly the road that lies ahead, wherever that road takes us.

For more information about XMRV and CFS, here are some links to articles and opinions from some of my colleagues in the battle against CFS and national journalists who have been investigating CFS for decades.

Dr. David Bell

Dr. Nancy Klimas

Dr. Charles Lapp

New York Times

Dr. Suzanne Vernon (CFIDS Association)

Whittemore-Peterson Institute