A Model for All Children’s Hospitals

Sadly, adults are not the only ones touched by cancer.  Kids get cancer, too.  While only triage-cancer-blog-school-reentry1% of all cancer in the United States is found in kids under the age of 15, in 2016 that means 10,380 children.  Childhood cancer has been on the rise for the past few decades.  However there is some good news out there.  Because of major treatment advances in recent decades, more than 80% of children with cancer now survive 5 years or more.

Thankfully, now we need to talk about how children transition from treatment back to school.  There is a lot of discussion about adults returning to work after taking time off to deal with a cancer diagnosis.  We talk about the normalcy, the sense of the purpose, and the chance to socialize that work may bring.  Well, for these kids, returning to school can mean exactly the same thing.  And it also comes with its own degree of challenges.  Thanks to Stony Brook Children’s School Intervention and Re-Entry Program, there is now a model of how to help children transition from treatment to school.

The School Intervention and Re-Entry Team is made up of physicians, nurses, child life specialists, and educational liaisons who work with school personnel including teachers, school nurses, counselors, social workers, psychologists and other staff members in a joint effort to ease the child’s return to the classroom. This is a service that is free to all Stony Brook Children’s patients. Some of the services they provide include:

  • Presentations to the school faculty regarding a patient’s illness and treatment
  • Classroom presentations to the patient’s peers
  • Acting as a liaison between the hospital and the school
  • Arranging for home instruction
  • Advocating for appropriate educational service
  • Attending 504 and CSE/IEP meetings
  • Providing medical documentation to schools
  • Facilitating neuropsychological evaluations and/or other educational testing services
  • Holding ongoing phone consultation regarding school issues, placement, curriculum, accommodations, and other educational services

The program’s services don’t stop at high school either.  This year, they were able to offer a workshop specifically for students with cancer and blood disorders who are transitioning to college. The workshop was designed to educate these students as well as their siblings, parents and school personnel about their unique needs, and to empower this special population of students to realize their academic goals. There was also an expo with representatives from many regional colleges available to speak individually with students and families about their schools, programs, and services.

We recognize that all children are not being treated at Stony Brook Children’s.  But if you are a parent of a child with cancer, you are used to being an advocate for your child.  Let Stony Brooks Children’s School Intervention and Re-Entry Program be a model you advocate for at your child’s hospital.  After all, we all want our children to be healthy and successful in everything they do.

Balancing Cancer & School

After a cancer diagnosis, children, adolescents, and young adults are likely to experience triage-cancer-blog-schoolmedical and non-medical complications in school. Therefore, parents and teachers should be aware of the educational issues related to cancer in order to meet their needs.

High-risk Cancers and Treatments

There are some cancers that cause children to have a higher risk of educational difficulties. These include brain tumors, tumors involving the eye or ear, Acute Lymphoblastic Leukemia (ALL), and Non-Hodgkin’s Lymphoma. There are also treatments, such as methotrexate, cytarabine, surgery involving the brain, and radiation to the brain, ear/infratemporal region, cisplatin, or carboplatin, that place children at a higher risk for developing learning and memory problems. In addition, research continues to uncover the connection between cognitive function and treatment for all types of cancer.

Common Problems Areas

The cancers and treatments mentioned above may potentially pose challenges with:

  • Attention/ability span
  • Ability to complete tasks on time
  • Concentration
  • Handwriting
  • Math
  • Memory
  • Organization
  • Planning
  • Problem-solving
  • Processing
  • Reading
  • Social skills
  • Spelling
  • Vocabulary

Dealing with Learning Problems

After treatment, it can be valuable for children to undergo a specialized evaluation by a pediatric psychologist; the examination will reveal how he/she processes and organizes information. If your child or student is having difficulties in school, make an appointment with the parent/teacher to establish a specialized plan. The plan should consist of specifically tailored strategies that will help the child better succeed. Examples of strategies that often help children with cancer-related educational problems are:

  • Seating near the front of the room
  • Modifying the test
  • Prolonging assignment due dates
  • Allowing the use of a calculator, keyboard, or tape-recorded textbooks and lectures
  • Assigning of a classroom aide

There are resources available. For example:

 For more information about navigating cancer and college, visit: http://triagecancer.org/blog/category/education/

Laws That Protect the Rights of Students with Disabilities

The Individuals with Disabilities Education Act (IDEA), the Rehabilitation Act of 1973 (section 504), and the Americans with Disabilities Act (ADA) were established to protect the rights and meet the needs of people with disabilities, such as cancer.

Individuals with Disabilities Education Act

The IDEA provides “free, appropriate public education which includes special education and related services, to meet the unique needs of all disabled individuals between the ages of three and 21” (34 Code of Federal Regulation [CFR], Sec. 300.1[a]). This law focuses on protecting students from kindergarten through 12th grade. To receive these services, children must qualify under one of these disabilities: autism, deaf/blind, deafness, hearing impaired, mental retardation, multiple disabilities, orthopedic impairment, serious emotional disturbance, specific learning disabilities, speech or language impairment, traumatic brain injury, visual impairment including blindness, and other health impairments. If the child qualifies, school districts are required to provide access to special services and accommodations. Children are reassessed every three years.

Rehabilitation Act of 1973 – Section 504

Section 504 of the Rehabilitation Act states that no individual with a disability “be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance or any program or activity conducted by any executive agency” (34 CFR, Sec. 104.4). This law focuses on protecting students from kindergarten through 12th grade and at any or college or graduate school that receives federal funds. Accommodations are provided for students with chronic illnesses such as cancer, and other disabilities that inhibit them from performing one or more major life activities. Some accommodations include extra time for assignments and tests, seating near the front of the classroom, using a calculator, or having a note-taker.

Americans with Disabilities Act (ADA)

This law prohibits discrimination in the workplace, transportation, communication, government, and public accommodations for people with disabilities. As adolescents and young adults begin to seek jobs and pursue their career goals, the ADA can provide protection against discrimination and access to reasonable accommodations. For more information about the ADA and reasonable accommodations, view these Triage Cancer Quick Guides: http://triagecancer.org/QuickGuide-ADA and http://triagecancer.org/QuickGuide-ReasonableAccommodations.

College and Cancer: Tips from the Inside

by Michele Rosenthal

One of my former students and advisees has said, “Being a college student is difficult enough. Adding cancer to the mix only makes things harder.”

I have been privileged to call higher education my professional home for many years. My experiences put me in close touch with students, faculty and administrative colleagues. I thoroughly enjoy working with young adults because of their energy, enthusiasm, and drive to move forward in their lives. My administratlibrary-869061_640ive work both in student and academic affairs at institutions in the midatlantic and northeastern regions of the United States has allowed me to support and help college students navigate the academic and student services landscape so that they can maximize their college journey.

In my experience, when college students are diagnosed with cancer, their drive to move forward does not diminish. For some the path may need to be altered or put on hold, but the commitment to complete their degree and move forward is palpable.

This drive is especially important at a time when budget concerns have forced institutions to cut back on resources. On many campuses, there are fewer staff members and many members of the faculty have been tasked with increased administrative responsibilities.

The very good news is that those who choose to work in higher education are committed to education and to doing their best to create academic environments that are conducive to learning despite cut backs and limited resources.

The result of budget cuts sometimes means that students need to work harder to advocate for themselves however. Simply stated, on some campuses in can be difficult to meet with a staff member in person as immediately as one may like or to receive a quick response to an email because personnel have been reduced and workloads are large. In the case of a college student who has been diagnosed with cancer, self-advocacy and tenacity are essential. It is especially important for you to be able to tell your unique story so that a situation can be created to fit your needs.

If you are student who has been diagnosed with cancer, here are 3 things that you absolutely need to know:

Create Your Support Network: While tittles vary, it is important to consider resources like The Director of Disabilities Services and Support, The Director of Health Services, The Dean of Students, Your class dean or academic advisor, your favorite professor, the Office of Student Services. Staff members in these offices will be poised to assist and support you. It is important to reach out to the The Director of Disabilities Services and Support early since accommodations that you may be entitled to (ex. extra time on an exam, housing preferences, transportation needs) cannot be granted retroactively. It might be a bit difficult to secure an appointment early on but do not give up. These folks will want to help you! Advocate and help them to get to know you.

You can complete your degree: While your diagnosis and treatment plan may alter your timeline, you can complete your degree. Do your best to be open to a reduced course load, taking time off and securing accommodations to support you while on campus. It may take time to be willing and open to making a change in your academic plan. Keep your eye on the prize and trust that although your plan may need to change, there are creative options that will allow you to earn your degree.

Create a Balance: Don’t forget to continue to engage in all that you love. If you were part of a team but can’t compete at the time of your diagnosis, maybe you can help manage it to continue to be involved. If you sang acapella or attended Student Government meetings, continue to as your treatment plan and energy allow. Do your best to let others in (as you feel comfortable) while engaging in a realistic curricular and co-curricular plan that makes sense for you.

Please feel free to contact me at MicheleRosenthal@Verizon.net if you need support and assistance to navigate and carve out a path for your unique journey.

Michele Rosenthal is a member of Triage Cancer’s Speakers Bureau and an educational consultant who has helped countless young adults with cancer identify appropriate on-campus resources and develop realistic plans for their unique circumstances.  She is currently the Assistant Dean, Undergraduate Programs, Sawyer Business School, Suffolk University.

Webinar: Cancer & College

SAMFund

Join Triage Cancer partner, The SAMFund, on Thursday, August 27, at 3pm EST/12pm PST for a webinar: Creating an Academic Plan: When You’re Diagnosed During College.

Register today!

As millions of college students head back to campus this week, a subset has to deal with the logistics of studying while undergoing cancer treatment. Leading this webinar is Michele Rosenthal, Assistant Dean, Sawyer Business School, Suffolk University and College and Cancer Resource. Michele will:

  • share strategies that help students effectively work with faculty, administrators, and their peers during treatment
  • discuss important details like taking time away from classes, reducing your course load, and resuming your studies after treatment
  • ensure that students facing cancer know about on-campus resources to develop a realistic and unique plan to fit their circumstances

Please email webinars@thesamfund.org with any questions you have about this event.

Michele will also be sharing her insights in a series of Triage Cancer blogs on education, coming soon!