Supporting Students with Chronic Illnesses

1. Supporting Students with Chronic Illnesses Carol J. Kaffenberger, Ph.D. Faculty Associate, Johns Hopkins University April 28, 2016

2. Goals • Provide Background Information and Resources • Describe Suggested Strategies for Working with Students with Chronic Illnesses • Learn About the School Support Teams (School Reintegration Team)

3. Overview • Goals • Our Stories • Issues and Research • School Support Teams • Medical Perspective • Team Planning • Next Steps

4. What is Chronic Illness? • Chronic illness is a life-threatening illness for which there is no cure although it is not necessarily terminal. • It involves medical support over an extended period of time and can result in debilitating consequences.

5. Some Chronic Illnesses

6. Prevalence • Prevalence estimations • 10 - 20% of the population of children estimated to have a chronic illness • Contributions to an increased prevalence • Improved medical diagnosis and treatment • New survivors • New conditions

7. Chronic Illness Stories What are your experiences of chronic illness?

9. Psychosocial Impact • Chronic childhood illness is a stressor • Risk for adjustment problems is 1.5 to 3 times higher than healthy peers • Families with lower functioning associated with higher rates of adjustment problems • Adjustment problems associated with duration of illness rather than severity. • Chronic illness in children is also associated with increased risk of parent adjustment problems. (Thompson & Gustafson, 1996).

10. Impact of Illness on Students who are Chronically Ill and Their Families • Families reorganize to respond to the illness • Normal childhood and adolescent development is interrupted • School performance is affected • Siblings of the sick adolescent experience negative consequences • Impact is long-lasting and life changing

11. Issues for Students with Chronic Illness and Their Families • School plays a central role in recovery and long-term adjustment • How chronically ill students and their siblings are supported during the process is related to positive outcomes • Transition is easier when there is communication among school, medical team and family

12. Are We Leaving Students with Chronic Illness Behind? Irwin, M. K., & Elam, M. (2011). Are we leaving children with chronic illness behind? Due to advances in medical science and technology more and more students with chronic illness area ble to attend school. And yet… School personnel lack knowledge and training about how to provide equitable educational experiences to students with chronic illness Lack of understanding of how Section 504, IDEA-Other Health Impaired legislation could be helpful Enrollment and attendance policies create barriers attendance, access to resources and federal funding

13. School Reentry ResearchMoore, J., Kaffenberger, C., Goldberg, P., Oh, K., & Hudspeth, R. (in press). School reentry for children with chronic illness: Perceptions of nurses, school personnel, and parents. Journal of Pediatric Oncology Nursing. Participants: 62 parents, 36 school personnel, 120 nurses completed questionnaires concerning their experiences and perceptions of school reentry for children with chronic illness

14. Findings While healthcare and school professionals felt they were doing an adequate job of supporting students with chronic illness, few activities and services were actually performed to facilitate children’s school reentry. Parents agreed that few services were performed but said that the services that were performed were helpful. Parents reported not significant difference in academic skills or abilities School attendance was significantly lower after diagnosis

15. School Reentry Research: Implications Communication disconnect: Parents don’t feel that their child receives all the services that they need School personnel don’t feel prepared; and believe they are doing the best they can Hospital and doctors’ nurses are not knowledgeable about school issues and are at a loss as to how to help parents facilitate school reentry

16. Implications for Schools • School’s role is undefined and unclear • Lack of communication among school, family and hospital team • Schools lack the information and resources to support students with chronic illness and their siblings

17. FCPS’s Response • Back to School Committee formed 1999 • Recommendations: • Use technology to link adolescent-school-hospital • Modify homebound instruction regulations to accommodate chronically ill • Provide support to the adolescent and family and facilitate the school reentry process

18. Professional School Counselor Parent Student with Chronic Illness Public Health Nurse School Social Worker Administrator & Teacher School Support Teams

19. Strategies for Working Collaboratively to Support Students with Chronic Illness Suggestions for School Counselors

20. Role for School Support Teams • Seek early involvement with family • Identify a school staff member liaison & coordinate services • Develop a support or school reentry plan • Involve the family and the student with a cancer/chronic illness in planning • Provide direct support for student, siblings, and families • Learn about available school resources • Educate staff, peers and classmates • Communicate with medical team

21. School Support Team Strategies • Contact and meet with the parents • Identify a school liaison who coordinates services • Develop a school response strategies and/or a school reentry plan • Provide support to student with chronic illness and their siblings and families • Educate staff, peers and classmates • Communicate with medical team

22. Roles of School Personnel • School staff resources • Administrator • School Counselor • Public Health Nurse & Clinic Assistant • School Social Worker • Teachers -Classroom, P.E., Team, Special Education • Identify a primary contact

23. How to Increase Communication • Consider early contact with the parent • Request a meeting between the parent and key school staff • Negotiate a primary contact with the parent • Develop a support or school reentry plan • Establish a communication system

24. Meet the Parents • Who should attend this meeting? • What do you want to accomplish at the meeting? • What does school need to you know? • What resources/accommodations will be needed? • What are your questions?

25. Case Studies: Where do you begin?

26. What Resources & Support Are Available at School? • Personal/social Support • Homebound Instruction • Child Study Committee • IDEA & Section 504 • Technology • Support for Siblings

27. Section 504 & IDEA – Other Health Impairedhttp://www.parentcenterhub.org/repository/ohi/ Child Study Committee Section 504 IDEA: OHI Other health impairmentmeans having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that— (i) Is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, sickle cell anemia, and Tourette syndrome; and (ii) Adversely affects a child’s educational performance. [§300.8(c)(9)]

28. IDEA: Other Heath Impaired Other health impairmentmeans having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that— (i) Is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, sickle cell anemia, and Tourette syndrome; and (ii) Adversely affects a child’s educational performance. [§300.8(c)(9)]

29. Section 504 Section 504 is a part of the Rehabilitation Act of 1973 that prohibits discrimination based upon disability. Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled are met. An impairment includes long-term illness that “substantially” reduces or lessens a student’s ability to access learning in the educational setting because of a learning-, behavior- or health-related condition. A 504 plan levels the playing field providing access to education Medical evidence Negotiated accommodations Plan in place for one year

30. Examples of 504 Accommodations: Highlighted textbooks Visual Aids Individual contracts Audio textbooks Multi-sensory learning Oral tests Taping lectures Preferred seating assignments Rearranging class schedules Behavior intervention plans Extended time on tests or assignments Shortened school day Peer assistance with note taking Resting in clinic Frequent feedback Positive reinforcements Extra set of textbooks for home use Computer aided instruction Enlarged print

31. Resources for School Teams • School Reintegration Handbook • Investigate resources in your school • Become familiar with community services and resources • Build a library of resource books for adolescents, siblings, and their families • Investigate online resources

32. Additional Resources Leukemia & Lymphoma Society (704) 960.1100 singers@dc-cap.leukemia-lymphoma.org Health Care Information Resources http://www-hsl.mcmaster.ca/tomflem/ill.html

33. Next Steps • Review medical flag list with child study or crossroads committee, and/or • Convene a meeting with administrator, school counselor, school social worker, and public health nurse to review school’s strategies. • Increase awareness of resources and information available about chronic illnesses that impact your school. • Use the School Support Teams brochure.

34. Action Plan • How does your school currently serve the needs of students with a chronic illness? • What are the barriers to service at your school? • What role do you play? What role could you play? • Who in your school community can you partner with? • What will you do differently as a result of this presentation?

35. Contact Information Carol J. Kaffenberger, Ph.D. ckaffenb@gmail.com