Educational Issues for Children with Cancer

Alma Morgan, M. Ed.

Educational Consultant

December 2006

In Regards to Education,

What Do All Children with Childhood Cancer Need?

Normalcy

How Do They Get Normalcy?

By Attending School

What Makes Attending School Possible While Going Through

Treatment?

• A Partnership

• Educational Plans

• Class In-services

Who Makes This Partnership?

• The Medical Team

• School Team

• The Parents

• The Child

Working as a Partnership TOGETHER,

What Can be Accomplished?• We can identify the educational needs of each

child • We can address the characteristics or factors that

impact the child’s academic success• We can determine what accommodations may

benefit the child• We can write a plan to address these needs and

accommodations • We can work together to assure Success!

Federal Acts and Statues that Affect Educational Issues

• The No Child Left Behind Act of 2001

• Section 504 of the Rehabilitation Act of 1973

• Individuals with Disabilities Education Improvement Act of 2004 (IDEA 2004)

What is Section 504?

It is a civil rights statue that prohibits discrimination based upon disability.

What constitutes a “disability”?

•A person who has a mental or physical impairment which substantially limits one or more major life activity.

•Has a record of such an impairment, or

•Is regarded as having such an “impairment”

What is defined as an “impairment”?

Any disability, long-term illness, or disorder that “substantially” reduces or

lessens a student’s ability to access learning in the educational setting

because of a learning problem, behavioral issue, or health-related

condition.

What are considered “Major Life Activities?”

• Self-care

• Manual tasks

• Walking

• Seeing

• Hearing

• Speaking

• Sitting

• Thinking

• Learning

• Breathing

• Concentrating

• Interacting

• Working

Examples of 504 Disabilities

• Allergies

• Asthma

• ADHD-Attention Deficit Hyperactivity Disorder

• Behavioral Issues

• Childhood Cancer

• Crohn’s Disease

• Cystic Fibrosis

• Diabetes

• Juvenile Arthritis

• Heart Disease

• Hemophilia

• Muscular Dystrophy

• Physical Disabilities

• Sickle Cell Anemia

• Spinal Bifida

What is IDEIA?

Individuals with

Disabilities Education

Improvement Act

IDEA was formerly known as Public Law 94-142; however, it was reauthorized in 1997 and has recently been revised again.

IDEA, Individuals with Disabilities Education Act, is a federal law that provides funding for special education. It provides a “free and appropriate education” to all students who fall within the special education category.

IDEA 2004

November 17, 2004- Enacted by Congress

December 31, 2004- Passed by the President

July 1, 2005- Law went into effect

Purpose of IDEA 2004

-to insure that all children with disabilities have a free public education that emphasizes special

education and related services designed to meet their unique needs and to prepare them for

further education, employment, and independent living…and to ensure that the rights of children

with disabilities and parents of such children are protected.

Who qualifies for special education services under

IDEA?•Any child 2-21 years of age, inclusive, who has a “disabling condition” which limits his or her progress in the regular classroom

•Any child who needs special education or related services to make progress or appropriate strides in education

What constitutes a “disabling condition”?

• Autism

• Deaf-Blindness

• Developmental Delay

• Emotional Disturbance

• Hearing Impairment/Deaf

• Learning Disabilities

• Mental Retardation

• Multiple Disabilities

• Orthopedic Impairment

• Other Health Impairment

• Specific Learning Disability

• Severe Disabilities

• Speech/Language Impairment

• Traumatic Brain Injury

• Visual Impairment

Child Study Team will determine what evaluations are needed.

•Medical

•Psychological

•Educational

•Social History

•Speech/Language

•Occupational Therapy

•Physical Therapy

Possible Accommodations to Include on the 504 Plan or the

IEP

•Student will be allowed to have two sets of books, one for home and one for school

•Student will be given permission to carry a water bottle and drink throughout the school day

•Student will be given bathroom, guidance, or clinic passes when needed.

•Student will be exempt from all physical education activities requiring strenuous exercises and long distance running

•Student will be exempt from all contact sports

•Student will be exempt from the presidential physical fitness testing

More Accommodations

•Student will be granted permission to wear a hat or scarf

•Student will be assigned a moderate workload with limited assignments requiring quality versus quantity

•Student will be granted extended time to complete classwork, quizzes, homework, and tests

•Student will be allowed to leave class 5 minutes early to get to his next class

•Student will be assigned an intermittent homebound teacher to due to numerous absences for clinic visits and hospitalizations

•Extended school year will be provided during winter break, spring break, and summer if needed

And More Accommodations

•Students will be granted a shortened school day or rest period if needed

•Student will be allowed to have a mid-morning or afternoon snack if needed

•Student will be granted a locker close to his or her classes

•Student will be assigned a parking space close to the school entrance

•Student will be given preferential seating in the classroom

•Student will be assigned a peer buddy to take notes or scribe if necessary

•Student will be kept informed of class activities and school functions

Personal Experience

All children with a diagnosis of childhood cancer should have either a 504 Plan or an

IEP.

Critical Time Periods for Children wit Cancer in Regards

to Education

• Time of Diagnosis

• School Re-entry

• 2-5 Years After Treatment

• Transition to Post-Secondary Education

2 – 5 Years After Treatment

Concerns about

late cognitive effects

Reasons for Late Cognitive Effects:TREATMENT

• Surgery

• Radiation

• Chemotherapy

• Bone-Marrow Transplant

Most Reported Late Cognitive Effects

• Poor organization

• Short-term memory deficits

• Attention problems including poor concentration and distractibility

• Difficulty with multi-tasking

• Fine motor skill deficits

• Slower thinking, processing speed

Interactive Case Studies

Making a reentry plan:Jon’s story

Jon:• Is 8 years old and in 3rd grade• Was diagnosed last year with ALL• Is returning to school after just completing a 6-

month course of chemotherapy• Lives with his mother; his father lives 3 hours

away

Trish Greene: Back to School Program, Leukemia and Lymphoma Society

Making a re-entry plan:Kirsten’s story

Kirsten:• Is 12 years old and in 7th grade• Was diagnosed last year with a brain tumor (glioma)• Was treated with surgery followed by radiation

therapy• Is returning to school after a 6-month absence• Lives with her mother, father and 4 younger siblings

Trish Greene: Back to School Program, Leukemia and Lymphoma Society

Feeling different, and wishing for “normal”

“I made it through cancer, but I almost didn’t make it through first grade—and spelling. I studied every night, for what seemed like hours. My mom would quiz me, and I knew everything. But I failed every test.

“Finally my mom went to school to meet with my teacher. She told my mom about all the things she was doing to try to help me. And she was trying to help….

“What I would have wanted to tell her is this: Please know that I do need help. But please don’t make me look different….I just want to be like everybody else.”

Eric R.15 years oldDiagnosed with sarcoma at age 4 years

Trish Greene: Back to School Program, Leukemia and Lymphoma Society

Reaching out, when every path brings new challenges

“When I went off to community college, it was different…I kept saying , “I need help.’ And they kept asking me, ‘What kind of help do you need?’ And as hard as I tried, I just couldn’t answer….

“What I realize now that I should have said is this; I need help, but I don’t know what I need. I have not walked this path before.”

Scott F. 20 years oldDiagnosed with leukemia at age 3 years

Trish Greene: Back to School Program, Leukemia and Lymphoma Society

As school nurses, administrators, teachers, and health care providers, please keep this one thought in mind. “We are ALL in this together.”To Treat

To Educate

To Work Towards the Betterment of the Patient/Child

We HaveA

Partnership!!