addressing educational concerns and future planning for cancer survivors
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Addressing Educational Concerns and Future Planning for Cancer Survivors. Presented by: Jamie May, Patient Academic Services Coordinator. Overview. A new population of students presenting a new set of needs and challenges for school systems Learning Issues - PowerPoint PPT PresentationTRANSCRIPT
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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 ofPediatric 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 absencecan 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 changesVary 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, SurvivorshipGuidelines, 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 meetingWhen?-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 costlyqualify -Schools do not have to -Provide recommendations accept outside evaluationsfor 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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InterventionsAccommodations 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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ReferencesLeukemia and Lymphoma Society (2013). Staying Connected: Facilitating the Learning Experience During and After Cancer Treatment.