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Addressing Educational Concerns and Future Planning for Cancer Survivors

Presented by: Jamie May, Patient Academic Services Coordinator

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Overview• A new population of students presenting a new set of needs

and challenges for school systems• Learning Issues

– What are they, when do they occur, and how do they impact learning?

• Back to School and Assessment– When should pediatric cancer patients be assessed and by whom?

• Interventions– School services and accommodations– Cognitive training programs

• Parents Role– Potential barriers, how to advocate, parent resources

• Future planning– College planning, scholarships and services– Career path

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An emerging population creates new needs in the classroom setting.

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How many students are wetalking about?

• Between 1994 and 2006, prevalence of

Pediatric conditions in US more than doubled

from 12.8% to 26.6%

The Framework Institute, United States

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Why is this research important?

• Student health and school performance

are directly correlated

increased school absence

can negatively impact emotional and physical development, school

performance, peer relationships and family interactions (Forrest et al, 2011)

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¼ of students in any given classroomCould have a CMC

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What does this mean?

• There is an increasing number of children surviving once-fatal diseases

• The burden of responsibility to educate these children is placed on unprepared school systems and personnel

• Student success is at stake

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Parents play a very importantrole

Child’sHealth

Child’sEducation

Paren

ts

Parents must try to be the strong link between 2 competing interests

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Why cancer survivors canbe at-risk academically

• Cancer diagnosis effects a child’s physical and emotional well-being, school attendance, academic performance, peer relationships and family stress

10Learning Issues

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Vulnerable Periods

• Risks for disruption in learning occur at multiple time periods both during and after cancer treatment Diagnosis

Limited access to assignments and instruction Reduced stamina for educational activities

Return to school Is more likely to be a process rather than an event Transition more difficult for classes that build on prior

knowledge Math, Science

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Vulnerable Periods

• Other school transitions– Elementary to middle school, Middle to High School,

Relocation– There will be a need to “re-educate” a different school

support staff with each transition

• Emergence of late effects– Establishing school-based accommodations and services

when needed– Potential time lag between first concerns, evaluation and

implementation of support

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Early Problems

• Disrupted InstructionMost problems center on

accommodation ofPhysical effects of disease and treatment

Nausea/fatiguePhysical risks (infection, port, safety)

Logistical/instructional barriersHomebound or hospital based instructionCoordinating essential aspects of curriculum within

the context of frequent absence or limited access to instruction and materials

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Early Problems

• Emotional well-being Some social concerns are possible

Less opportunity to interact with peersClassmates may have concerns

“Catching” cancer (younger students)Fear, lost contact, don’t know what to do/say

AnxietyBeing left out by peers or treated differentlyBody image issues (hair loss, physical changes)Falling behind academically

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Late Effects

What are Late Effects?

Side effects of cancer treatment that occur months to years following the completion of treatment

Changes in learning and memory, physical changes,

psychosocial changes

Vary among survivors of childhood cancer

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Physical Late Effects with Potential to Impact Academic Performance

• Fatigue• Find/gross motor

impairment• Sensory changes

– Hearing Loss– Vision changes

• Cognitive impairments

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Cognitive Late Effects

Changes in learning and memory that occur after treatment May be noticed first when

Children have trouble learning new materialChildren seem to easily forget what they have

learnedChildren work more slowly than they used to or

have difficulty completing tasks

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Areas Where PerformanceMay Be Affected

– Academic achievement (math, reading, spelling)– Nonverbal/visual spatial skills (visual-motor and

perception)– Handwriting– Attention span– Concentration– Social skills– Processing speed– Memory– Executive functions

Children’s Oncology Group, Survivorship

Guidelines, 2006

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Executive Functions Attention, regulating

behavior Working memory Planning, organization Flexible problem-solving Emotional control Comparable to

behaviors exhibited by students diagnosed with ADHD

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Memory

• Retrieval/Recall is the primary issue

• Impact on attention, executive functions, and processing speed results in overload

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Who Is At Risk?

• Not all children and young adults treated for cancer experience late effects

• Who is at greatest risk?– Those treated in infancy

early childhood– Varies depending on type

of cancer and treatment– Research shows that

girls are more susceptible to late effects

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Signs of Learning Difficulties

• Warning signs can include– Excessive time needed

to completing school work

– Short attention span– Failing/lower than normal

grades– Expressed negative

feelings about school– Frustration– Trouble completing tasks

on time

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Back to School• Returning to school can provide a

sense of normalcy and is encouraged by the medical care team as soon as it is safe

• Set up a meeting with school staff• Closely monitor school progress • Advocate for intervention when needed• Open and consistent school

communication

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Initial Return To School

Before changes are noticed: Close monitoring and evaluation of child

over time Communication & education of others

regarding unique pattern of late effects – let teachers know what to expect!

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School CommunicationSet up a school meeting

When?-Initial return to school

-Start of each school year

-When there is a transition

-Request a meeting whenever there are concerns

Focus on• Medical history• Late effects • Special education law• Need for hospital homebound

services• Attendance

expectations/anticipated absence • Evaluations• Behavioral and emotional issues • Recommendations for classroom,

curriculum, and special services/accommodations

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Medical 504 Plan

•  Children may need a medical 504 plan Reduced workloadExtra timeModified physical

education Permission to carry

water/wear hat“Anytime pass” to

school nurse

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IDEA/504/ADA Comparison

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Special Education

• Survivors with late-effects can benefit from special education services – Individualized education plan

• Entry into special education requires evaluation to determine eligibility

• Neuropsychological or school-based evaluations can be administered to determine eligibility

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School-Based AssessmentWhat’s Included• Intelligence • Academic achievement • Speech/Language • Fine/Gross Motor • Skills • Social/Emotional

Functioning • Memory (rare)

What’s Missing• Attention • Executive Functioning • Memory (often)

Wilmshurst & Brue, 2005

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School-Based AssessmentConcerns

• School’s ability to interpret test results within the context of the child’s disease and treatment history

• Testing is not administered by individuals as skilled and qualified as neuropsychologists and do not cover everything

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Additional Concerns

• Students displaying difficulty in school are referred to RTI, response to intervention

• Interventions are put into place in an effort to accommodate student needs and improve progress

• Typically students must go through three tiered levels of interventions without success before being recommended for evaluation for special education service

• In the meantime, time is passing and students are not getting the services they need

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Neuropsychological Evaluations

• You can seek a baseline evaluation of cognitive function by a neuropsychologist or psychologist

Pros Cons -Most schools will accept -Testing is not usually

testing to initiate the IEP covered by insurance and

process for students that can be costly

qualify -Schools do not have to

-Provide recommendations accept outside evaluations

for school accommodations

and detailed information to

assist in IEP development

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Neuropsychological Evaluations

Formal neuropsychological testing typically includes:

– Intelligence– Attention/Executive Functioning– Academic Achievement– Visual and Verbal Memory– Receptive and Expressive Language– Visual-Spatial Skills/Visual-Motor Skills

– Fine-Motor Dexterity– Emotional/Behavioral/Social Functioning

– Adaptive Functioning

Ernst, Pelletier, & Simpson, 2008

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IDEA Categories

• Three most common categories under IDEA used for IEP development for cancer survivorsOHI- Other health impairment

TBI- Traumatic Brain Injury

SLD- Specific learning disabilities

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Interventions

Accommodations and supports include: Preferential seating Extra time for assignments and exams Reduced workload- quality vs. quantity Tests based on recognition memory- multiple choice Oral tests or voice recognition devices for long answers Breaking tasks down into smaller/manageable parts Organizing, time management, and planning strategies Help getting started Assistive mechanisms(motor/sensory)

-Keyboarding, assistive technology, etc. Organizational tools- Calendars, colored folders Copies of notes and study guides

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Interventions

Teacher utilizes FM system for students who have experienced hearing loss

Enlarged print worksheets and books for vision impairments

Modified transportation for safe travel to school Extra set of books for home Access to school elevators Small group instruction Modify class schedule- more difficult classes at the

beginning of the day when energy is high

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Education Alternatives/Additional Support

• Duel-enrollment with online courses– Socialization is important, a combo is best if utilizing online

programs

• Hospital homebound support– Services are limited in value and time– Intermittent homebound requires 3 consecutive absences in

many counties. It is possible to advocate that this is not appropriate for your child’s situation.

– Is meant to be a temporary placement to prevent academic decline, therefore does not meet the needs of chronic illness students.

– Know how many hours of service are provided based on the IEP and keep track of time provided

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Accommodations forCollege Entrance Exams

• Accommodations such as “extended time” can be provided for SAT and ACT

• Get help applying for accommodations through school guidance or ESE coordinator

• Documentation may be required if student does not have a disability or is under OHI category

• Most requests are filled if the current IEP provides “extended time”

• ACT seems to have tougher regulations

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Accommodations forCollege Entrance Exams

• You can apply online or by mail

• Contact school guidance or refer to collegeboard.org for more information

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Parent Role

• Parents are the best advocate– Help educate school staff of diagnosis,

needs, late effects– Monitor progress, quarterly rather than

annually (Armstrong, 2006)– Know rights and laws– Advocate for services– Assist survivors with development of self-

advocacy skills (upper level/college)

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Parent Resource

• Leukemia & Lymphoma Society– Parent tip sheets for

school communication– Resources for parents

and schools– Programming for patients

and families

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Parent Resource

• www.wrightslaw.com– Information regarding

education law, advocacy tips, advice blog, legislation, etc.

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Parent Resource

• http://nichcy.org/– Information about

education law, diagnosis, advice/info for parents

– Great resource on letter writing for parents

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Parent Resource

• http://www.theiepadvocate.com/default.html– Website designed by

a mom in Orlando – Helps parents

navigate the IEP process

– Offers consiltations

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Parent Resources

• APHOES– Association of pediatric

hematology oncology education specialists

– Provides practice guidelines

– Organization with the common goal to provide better educational opportunities and resources for cancer survivors

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Future Planning

• Cancer survivors can and do graduate high school and continue on to college

• Self-advocacy will be key at the college level

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College Transition

• A transition plan– Know laws that

protect students at the college level

– Consider factors that affect school selection

– Learn about financial aid and scholarships

– Know how to request accommodations

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College Transition• Laws are different for

college students• Colleges and career

schools cannot discriminate against students

• Section 504 still applies• Title II of Disabilities Act

protects the rights of individuals to ensure they benefit from all state and government programs and services

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If services will be needed…

• Provide a summary of the student’s cancer treatment for the student to take to college

• make sure the student is aware of the local medical and mental health facilities where she will be attending school

• Make sure student is aware that she needs to contact Office of Student Disability (this may have a different name at different institutions) at the college or university to request academic accommodations.

• Inquire about the level of assistance offered at each college or university during the application process as this will vary significantly from one setting to another and may impact college choices.

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Accommodations in college or career school

• Extended time• Note taker or tutor• Listening device for hearing • Large print for vision• Software to read text out loud• Voice recognition devices

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For post secondary studentsneeding vocational training or transition toindependent living

• Vocational rehabilitation and/or job training services are available. Cognitive, physical and sensory impairments should be considered when evaluating job training requirements.

• Request that the vocational counselor be involved with the student in a proactive manner to inform employers of the survivor’s strengths and weakness rather than postponing involvement until a problem has occurred on the job.

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What Career Should I Pursue?

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SCHOLARSHIPS

• Students may be eligible for federal aid and scholarships for cancer survivors

• Siblings may also be eligible for scholarships

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Children’s Cancer CenterScholarships

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Cancer Survivors’ Fund

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NCCS Beyond the Cure

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The Samfund

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R.O.C.K College ScholarshipProgram

• Through American Cancer Society

• For Florida Residents

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The Stephen T. MarchelloScholarship Foundation

• Scholarships for childhood cancer survivors

• Scholarships without residency requirements

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Cancer for College

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References

Armstrong, F.D. (2006). Neurodevelopment and chronic illness: Mechanisms of disease and treatment. Mental Retardation and Developmental Disabilities Research Reviews, 12, 168-173.

Ernst, W.J., Pelletier, S.L.F., & Simpson, G. (2008). Neuropsychological consultation with school personnel: What clinical neuropsychologists need to know. The Clinical Neuropsychologist, 22, 953-976.

Wilmshurst, L., & Brue, A.W. (2005). A parent’s guide to special education. New York:American Management Association.

Mitby, P.A., Robison, L.L., Whitton, J.A., Zevon, M.A., Gibbs, I.C., Tersak, J.M., et al. (2003). Utilization of special education services and educational

attainment among long-term survivors of childhood cancer. Cancer, 97, 1115-1126.

Boman, K.K., Lindblad, F., & Hjern, A. (2010). Long-term outcomes of childhood cancer survivors in Sweden. Cancer, 1385-1391.

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References

Leukemia and Lymphoma Society (2013). Staying Connected: Facilitating the Learning Experience During and After Cancer Treatment.