Addressing Educational Concerns and Future Planning for Cancer Survivors

1. Addressing Educational Concerns and Future Planning for Cancer Survivors Presented by: Jamie May, Patient Academic Services Coordinator

2. 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

3. An emerging population creates new needs in the classroom setting.

4. 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

5. 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)

6. ¼ of students in any given classroom Could have a CMC

7. 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

8. Parents play a very importantrole Parents must try to be the strong link between 2 competing interests Child’s Health Parents Child’s Education

9. 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

10. Learning Issues

11. 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

12. 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

13. Early Problems • Disrupted Instruction • Most problems center on accommodation of • Physical effects of disease and treatment • Nausea/fatigue • Physical risks (infection, port, safety) • Logistical/instructional barriers • Homebound or hospital based instruction • Coordinating essential aspects of curriculum within the context of frequent absence or limited access to instruction and materials

14. Early Problems • Emotional well-being • Some social concerns are possible • Less opportunity to interact with peers • Classmates may have concerns • “Catching” cancer (younger students) • Fear, lost contact, don’t know what to do/say • Anxiety • Being left out by peers or treated differently • Body image issues (hair loss, physical changes) • Falling behind academically

15. 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

16. Physical Late Effects with Potential to Impact Academic Performance • Fatigue • Find/gross motor impairment • Sensory changes • Hearing Loss • Vision changes • Cognitive impairments

17. Cognitive Late Effects • Changes in learning and memory that occur after treatment • May be noticed first when • Children have trouble learning new material • Children seem to easily forget what they have learned • Children work more slowly than they used to or have difficulty completing tasks

18. 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

19. Executive Functions • Attention, regulating behavior • Working memory • Planning, organization • Flexible problem-solving • Emotional control • Comparable to behaviors exhibited by students diagnosed with ADHD

20. Memory • Retrieval/Recall is the primary issue • Impact on attention, executive functions, and processing speed results in overload

21. 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

22. 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

23. 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

24. 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!

25. School Communication Set up a school meeting 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 When? -Initial return to school -Start of each school year -When there is a transition -Request a meeting whenever there are concerns

26. Medical 504 Plan • Children may need a medical 504 plan • Reduced workload • Extra time • Modified physical education • Permission to carry water/wear hat • “Anytime pass” to school nurse

27. IDEA/504/ADA Comparison

28. 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

29. School-Based Assessment What’s Included What’s Missing Attention Executive Functioning Memory (often) Wilmshurst& Brue, 2005 • Intelligence • Academic achievement • Speech/Language • Fine/Gross Motor • Skills • Social/Emotional Functioning • Memory (rare)

30. 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

31. 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

32. Neuropsychological Evaluations • You can seek a baseline evaluation of cognitive function by a neuropsychologist or psychologist ProsCons -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

33. 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

34. IDEA Categories • Three most common categories under IDEA used for IEP development for cancer survivors OHI- Other health impairment TBI- Traumatic Brain Injury SLD- Specific learning disabilities

35. 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

36. 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

37. 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

38. 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

39. Accommodations forCollege Entrance Exams • You can apply online or by mail • Contact school guidance or refer to collegeboard.org for more information

40. 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)

41. Parent Resource • Leukemia & Lymphoma Society • Parent tip sheets for school communication • Resources for parents and schools • Programming for patients and families

42. Parent Resource • www.wrightslaw.com • Information regarding education law, advocacy tips, advice blog, legislation, etc.

43. Parent Resource • http://nichcy.org/ • Information about education law, diagnosis, advice/info for parents • Great resource on letter writing for parents

44. Parent Resource • http://www.theiepadvocate.com/default.html • Website designed by a mom in Orlando • Helps parents navigate the IEP process • Offers consiltations

45. 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

46. Future Planning • Cancer survivors can and do graduate high school and continue on to college • Self-advocacy will be key at the college level

47. 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

48. 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

49. 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.

50. 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