1 Supporting Students with Chronic IllnessesIntroduction Welcome to the School Reintegration Team Training. My name is Carol Kaffenberger. I am on the faculty of Johns Hopkins. My focus is the issues of providing psychosocial support of children with chronic illness. Before joining the faculty at George Mason, I was a school counselor here in Fairfax County. You have been invited to this session because your school is currently supporting a student with a chronic illness; or you indicated your interest in this training at the August awareness session. Today we will [NEXT] Carol J. Kaffenberger, Ph.D. Faculty Associate, Johns Hopkins University April 28, 2016

2 Goals Provide Background Information and ResourcesDescribe Suggested Strategies for Working with Students with Chronic Illnesses Learn About the School Support Teams (School Reintegration Team) Provide Background Information and Resources Describe the School Reintegration Team Model Provide Team Planning Opportunity But before we begin, I would like to acknowledge the support of the FCPS leadership. [Introduce those attending] And introduce the School Reintegration Committee. [Committee members please stand] [NEXT]

3 Overview Goals Our Stories Issues and Research School Support TeamsMedical Perspective Team Planning Next Steps Overview of Today’s Training Goals Materials Our Stories Issues and Research School Reintegration Team Model 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. Definition 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. Prevalence One million children in US suffer from a debilitating chronic illness Ten million est. have chronic illness of a less severe nature 2% of all children have a debilitating chronic illness In Fairfax, approx 250 students received homebound instruction Prevalence of chronic illnesses are increasing due to several factors Advances in medical diagnosis and interventions Number of low birth weight children surviving New diseases (AIDS/HIV)

5 Some Chronic IllnessesAsthma Diabetes Inflammatory Bowel Disease Cancer Epilepsy Juvenile Arthritis Congenital Heart Defects Hemophilia Lupus Cystic Fibrosis HIV/AIDS Mental Illness Asthma is the most common chronic illness (est. that moderate to severe asthma occurs in 10 per 100 children) Cancer is the most common cause of death by disease in children (est 1 in 330 under the age of 19) Cystic Fibrosis (1 in 2000-whites; 1 in 1700 in blacks; nonexistent in Asian) Sickle Cell (1 in 400 African Americans)

6 Prevalence Prevalence estimations% 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 Prevalence estimations 10 tp 20% More than 1 million children in US have an impairemnt that interfers with daily functioning 10 million total Contributions to an increased prevalence 1. Improved medical diagnosis and treatment – children live longer – e.g., Cystic Fibrosis life expectancy was 11 years in ’66 by ’93 it was almost 30 yrs; ALL leukemia was always fatal, now 70+% live more than 5 years; Sickle cell in ’60 life expectancy was 14 years now its 42 for men and 48 for women and higher for sickle cell hemoglobin C disease. 2. New survivors – preemies surviving low birth weight but often having complications 3. New conditions such as drug and alcohol fetal syndrome and AIDS

7 Chronic Illness StoriesWhat are your experiences of chronic illness?

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9 Psychosocial Impact Chronic childhood illness is a stressorRisk 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). Chronic childhood illness is a stressor Definition of psychosocial adjustment – encompasses psychological adjustment, social adjustment, and school performance 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, esp. mothers.

10 Impact of Illness on Students who are Chronically Ill and Their FamiliesFamilies 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 Families reorganize to respond to the cancer diagnosis Respond to the crisis Close in around the sick child Roles change Normal childhood and adolescent development is interrupted Increased dependence School performance is affected 40% of children with chronic illness experience school related problems Psychosocial – interpersonal and social interaction Cognitive impairment As a result of the disease or treatment Leading to as much as 3times higher incidence of learning disabilities Cause of 25% of the other school related problems are attributed to absenteeism, increased anxiety or depression, attentional difficulties, fatigue, functional limitations, attitude of parents or school personnel Siblings of the child with cancer experience negative consequences Siblings on the outside Often their responses and needs are misunderstood by family and ignored by outsiders Impact is long-lasting and life-changing And even though the literature/research says that ultimately survivors, families make it, that they are often empowered by the experience we are only now beginning to examine the long term impact of the experience; And look at how the way families are supported through the experience can mediate the long term impact.

11 Issues for Students with Chronic Illness and Their FamiliesSchool 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 School plays a central role in recovery and long-term adjustment Symbolic of return to normal Sooner the child gets back the better Average attend 40 days during the first year of treatment Even after 3 years attendance is irregular Relationship between attendance and performance How children, survivors and sibs are supported during the process is related to positive outcomes Schools typically don’t make it easy to come in and out of school; attendance policies, lack of nursing staff, lack of information about the particular needs of sick children all contribute to the frustration families experience Emotional issues described in the research that are exacerbated when the child is not in school: Self-esteem issues Such as fear of being deserted Social isolation Anxiety about appearance changes Depression, anger, helplessness The 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 Research Moore, J. , Kaffenberger, C. , Goldberg, PSchool Reentry Research Moore, 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 13

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 14

15 School Reentry Research: ImplicationsCommunication 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 15

16 Implications for SchoolsSchool’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 School’s role is undefined and unclear When schools are not identified by medical teams or families as primary resource Counselors, social workers, public health nurses are in a unique position to understand needs of sick child and sibling and are able to coordinate school services Lack of communication among school, family and hospital team Even though the literature abounds with recommendation about services to children, comprehensive teams etc the reality is that these services are rare In my area, northern va., I have contacted three of the cancer hospitals, they all see the need, say that if parents come to them they will provide resources, that they are doing all they can Schools lack the information and resources to support sick children/adolescents and siblings Typically the counselor is not prepared when a diagnosis is made At a time of crisis families and schools are scrambling for resources When the counselors and school community has gathered some resources, become educated about some of the issued they are more likely to be able to be of assistance to the family Schools often need to ‘invent the wheel’ to find out how to support students and families

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 School Support Teams Professional School Counselor ParentSchool Support Teams Professional School Counselor Public Health Nurse Administrator & Teacher Student with Chronic Illness Parent School Social Worker We have pictured the Team Reintegration Model in this way The student is in the center with the School Counselor, Social Worker and Public Health Nurse as the team surrounding the child. Each member of the team provides support to the child, teachers, family Without communication among the team members services may be duplicated or assumptions about who is doing what are made By individualizing the reintegration plan for each child we can Capitalize on the expertise of team members Share the responsibility There are some responsibilities that fall squarely in one person’s area of expertise; however many of the communication roles essential to success of the plan can be coordinated For instance The liaison can be a person on the team, an administrator or teacher; the person with an established relationship with the family

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

20 Role for School Support TeamsSeek 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 We have talked about WHY school reintegration is essential and HOW we conducted the training, but Now we will talk about HOW it can be accomplished Seek involvement with family Families tend to close in; however they appreciate involvement with the school and efforts by the school to return to normal and keep child involved Handbook has a list of questions to think about in early contact with the family. Encourage communication Reach out; don’t wait to be called Do the research; find out about the disease; use parents to help educate you; use your handbook; the internet Coordinate Services Negotiate roles among team members and with family Suggest to the family ways the school can stay involved Educate the parent about services that can be provided Identity a School Liaison Ask permission to meet with or communicate with hospital team Facilitate School Reentry Plan Meet with parents, teachers Assess needs, set goals, and provide resources Understand the families’ dynamics (what stage in family develop) What resources does the family have What resources do they need? Help to set goals How will the class be informed? How much contact does the child want? What information do the parents need? Involve the chronically ill student Support the child/adolescent Involve child in planning return to school and educating and contact with peers Support siblings and families Be an advocate and resource for siblings (hospital support groups) Connect sibs with other sibs of sick children Be persistent; sibling may not be open at first Check with sibs not about the sick child Parents may need to be helped to see how they can support the sibling

21 School Support Team StrategiesContact 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 Suggested components of school reintegration model Identify a liaison to coordinate services Provide services to family and siblings Provide services to sick child/adolescent Consult with teachers and school Educate peers and classmates Communicate with medical team

22 Roles of School PersonnelSchool staff resources Administrator School Counselor Public Health Nurse & Clinic Assistant School Social Worker Teachers -Classroom, P.E., Team, Special Education Identify a primary contact Who Can Help at School? 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 Who are you most comfortable with? Who is the logical person? How is the school organized? What are you going to need? Negotiate a role for school

23 How to Increase CommunicationConsider 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 How to Increase Communication Consider early contact with the school Let someone at school know asap Request a meeting with school staff Negotiate a primary contact with the school 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? Meeting at School 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? Purposes: Share information about the student’s illness, prognosis, physical, social, emotional, and educational needs Learn about school resources available Negotiate roles and responsibilities Plan for staff workshop and/or classroom presentation Outcomes: Identify a primary school contact, or liaison, who will help you get the information you need and develop strategies to facilitate school reintegration. Identify responsibilities Sign exchange of information forms Establish a communication system with the school Exchange information about additional resources that may be needed

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 What school resources and support are available to your child? Personal/social support Stay connected to the classroom and peers Consider buddies, , video, pictures, cards, visits Establish a system to receive assignments Homebound instruction Homebound instruction is available to students who cannot be in school for extended periods Policies and procedures vary from school system to system so this is one of the items you will want to ask about in your initial contact with the school School policies and resources are sometimes available on school system’s website IDEA and 504 services Your child may qualify for special services Explore with your school administrator/school counselor what services your child may qualify for Consider referring to the child study committee Technology Online courses Computer connections at home/hospital to school Internet resources Support for siblings Consider the needs of the siblings Notify the siblings’ teachers and/or school counselor Consider individual counseling or small group

27 Section 504 & IDEA – Other Health Impaired http://www. parentcenterhubChild Study Committee Section 504 IDEA: OHI Other health impairment means 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 ImpairedOther health impairment means 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 TeamsSchool 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 Begin to develop your resource base so that when you faced with dealing with the diagnosis of cancer or another chronic illness you are able to move into action. The more information you have the more likely that you will be central to the family’s link to the school What I have seen is that when a diagnosis is made a crisis atmosphere occurs. Everyone is scrambling for information. If you can be the resource person you will be serving an important function. Investigate resources in your school system available to sick children How do families access homebound; how do homebound teachers communicate with the school What special services, 504, do children with chronic illnesses qualify for What could your school provide (computer hook up), cards, visits, videos to keep the sick child connected Become familiar community services What resources, such as chapters of parent support groups, informational groups, advocacy groups, are available that you can tell the parents about Build a library of resource books for children and their families (see my recommended reading list) Books can be used to educate school community, talk with children about the disease, resources to families Having these books and resources on hand can be very timely Investigate online resources (see my list) Great source of information to get educated quickly

32 Additional Resources Leukemia & Lymphoma Society (704) 960.1100 Health Care Information Resources

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. Share resources and information Share what you have learned with administrators and school staff Continue the dialogue Individualize to meet the needs of your school’s chronically ill students Provide School Reintegration Committee with feedback Let us know how we can help, how useful this training and resources are, and how they can be improved Participate in follow-up evaluation Complete the evaluation and feedback sheet located on your table. Consider participating in follow-up evaluation of resources and training later this spring

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 Carol J. Kaffenberger, Ph.D.Contact Information Carol J. Kaffenberger, Ph.D.