Educating Students with Complex Medical Needs

Lynn Repetsky, M.S. and

Kathy Ho, M.A.Hospital School Teachers

How much do you really know?

What percentage of children suffer from a chronic illness?

c) 20%

Today, the overall survival rate for children diagnosed with cancer is:

c) ~80% 

What is the survival rate for heart transplant patients after five years?

b) 75% 

Usually, hemodialysis for kidney disease lasts how long?

d) four hours, three times a week 

Which of the following are possible side-effects from organ transplantation and associated medications? (Circle all that apply)

Stretch marks Diabetes Arthritis

Cancer Cognitive deficits Nausea and vomiting

Unwanted hair growth Mood swings High blood pressure

THE HOSPITAL SCHOOLAT STANFORD CHILDREN’S

• Part of the Palo Alto Unified School District• 2 classrooms serving over 1,000 students each

year, grades K-12• Attend multidisciplinary rounds as part of health

care team• Shift in population over last 5 years from acute

care to chronic illness

CHRONIC ILLNESS

• Any condition that interferes with daily functioning for more than 3 months, or results in hospitalization lasting more than 1 month

• As many as 1 in 4 children suffer from a chronic illness; i.e. 15-18 million children aged 17 and under

2012: www.ncbi.nlm.nih.gov/pmc/articles/PMC3319320/

COMPLEX CHRONIC ILLNESS

Brain injuries, cancer (Leukemia, lymphoma, brain tumors), congenital

heart defects, Cystic Fibrosis, HIV/AIDS, immunodeficiency diseases, kidney disease, pulmonary disease, seizure

disorders, sickle cell

ONCOLOGY FACTS www.cancer.gov/cancertopics/factsheet/Sites-Types/childhood

• In 2014, an estimated 15,780 children were diagnosed with cancer, with 1,960 deaths

• In 1975, about 50% of children diagnosed survived (>5 years). Between 2004 and 2010, over 80% survived. In the most common childhood cancer, acute lymphoblastic leukemia (ALL), the survival rate is about 90%.

HEART DISEASE FACTS www.cdc.gov/ncbddd/heartdefects/facts.html

http://www.childrensheartfoundation.org/about-chf/fact-sheets

• ~10% are deemed uncorrectable (heart transplant)

• There are currently 2 million people in the US with a CHD.

• About 1% of babies are born with a Congenital Heart Defect (CHD)

• Over 50% of children with CHD require at least one invasive surgery in their lifetime

CYSTIC FIBROSIS FACTS http://www.disabled-world.com/health/respiratory/cystic-fibrosis/life-expectancy.php

• Approximately 30,000 people in the US have CF,

with about 1,000 new cases diagnosed each year.

• In the 1950s, few people with CF lived long enough to attend elementary school. In the 1980s, the life expectancy was 14 yrs. Now, it is over 35 years.

RENAL DISEASE FACTSkidney.niddk.nih.gov/kudiseases/pubs/childkidneydiseases/school_family_problems/school_family_problems_508.pdf

• Dialysis – 3 days a week, ~3-4 hours/day

• Buildup of wastes in the body can hamper nerve and brain function

• Concentration, language development, motor skills, and fatigue

• Kidney transplant

ACADEMIC IMPACT

• Impact of illness on academic functioning– Missed school days– Academic difficulties due to illness or treatment– Necessity for home schooling

• Difficulties with school reintegration• Presence of appropriate educational

resources

HEALTH AND LEARNING

• Medical advances – emerging population of students with complex chronic health conditions returning to school

• Educators, physicians, school nurses don’t always discuss impact of health condition on learning

• Health & education needs not well integrated

ABSENTEEISMLynch, Lewis & Murphy, 1993, Thies 1999

• 58% routinely miss school

• 10% miss more than 25% of year

• 30% days absent in grading period – more likely to fail

• Pattern of absence & degree of condition– Multiple brief absences vs. prolonged absences– Impact on social/academic life of school

WHAT CAN YOU DO WHEN A CHILD IS ABSENT?

• Provide essential work (homework, reading)

• Work with Hospital School or Home/Hospital instructor

• Don’t wait if you can predict it will happen

WHAT CAN YOU DO WHEN A CHILD IS ABSENT?

• Use technology to stay connected

• Keep kids engaged socially and emotionally, as well as academically

HIPAA

• Health Insurance Portability and Accountability Act of 1996

• Primary goal is to make it easier for people to keep health insurance, protect confidentiality and security of healthcare info, and help healthcare industry control admin costs.

FACTORS AFFECTING SCHOOL: Physical Deficits

• Reactions to medication

• Poor stamina, low energy

• Headaches, stomachaches, nausea

• Impatience, loss of interest, irritability

• Motor weakness or incoordination, palsy

FACTORS AFFECTING SCHOOL: Uneven Physical Course of Illness

• Return to school plans temporary and frequently modified

• Support staff may not have time to meet frequently and modify program

• School becomes low priority

FACTORS AFFECTING SCHOOL: Learning Problems

• Academic problems overwhelming for tired and ill children

• Prior learning problems ignored due to illness• Extended absences resulting in lack of sequential

learning experiences (math)• Cognitive deficits due to illness or treatment

FACTORS AFFECTING SCHOOL: Lack of Normal Social Experiences

• Physically isolated from peers

• Inability to participate in active playground experiences

• Less in common with old friends

• Bullying

FACTORS AFFECTING SCHOOL: Emotional Responses

• Dependence on parents causing emotional regression

• Feeling uncomfortable around peers• Peer withdrawal or rejection because of difference

in appearance, speech, etc.• Difficulty adjusting to structure and demands of

school after attention from illness• Wisdom beyond years

FACTORS AFFECTING SCHOOL: Family Issues

• Parents may experience delayed emotional reaction to illness

• Child’s illness puts stress on marriage

• Siblings feel neglected

• Family routine disrupted during illness and is difficult to re-establish normalcy

• Economic impact

FACTORS AFFECTING SCHOOL: Hidden Issues

• Presents well at school but has treatment regiments at home

• Masking deficits

• Social abilities hide academic deficits

FACTORS AFFECTING SCHOOL: Pharmacology

• Immunosuppressants– Mood changes, vision impairment, photosensitivity,

food/drug interactions, seizures

• Antibacterials/Antivirals/Antifungals– Rash, photosensitivity, anemia, muscle pain, cognitive

changes, vision changes, seizures

• Neurology– Lethargy, blurred vision, slurred speech, dizziness,

fatigue, memory difficulties

FACTORS AFFECTING SCHOOL: Pharmacology (cont.)

• Chemotherapy– Memory loss, decline in intellectual ability,

changes in brain structure, behavioral changes– Hair loss, nausea, mouth sores, seizures, muscle

pain, fatigue

• SSRIs– Agitation, nausea, suicidality, irritability,

unusual behavior changes

A Conversation with David

NEW DIAGNOSIS vs CONGENITAL CONDITIONS

• What was the student’s level of academic functioning prior to illness?

• Masking deficits• Socio-emotional

issues

CURRENT DEFINITIONS:Other Health Impairments (OHI)

California Administrative Code, Title 5, Section 3030 (f)

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:

1.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,

and sickle cell anemia; and

2. Adversely affects the student's educational performance.

PROBLEMS WITH CURRENT UNDERSTANDING

• Chronic illness can be invisible – parents may not share

• Unclear guidelines on identifying adverse affects on performance

• Difficulty attributing deficit to illness

• No system in schools/medical setting assessing relationship between academic performance & chronic health condition

COGNITIVE LATE EFFECTS

• Learning difficulties become evident two to five years after completion of treatment.

• Possible decline in IQ and/or impaired memory and ability to process information

SCHOOLS NEED TO. . .

• Identify early – schools shouldn’t wait until children fail

• Develop and evaluate education plan– Clearer process

– Information disseminated early

– Ongoing communication/collaboration among professionals

– Present education options

– Preference – dual-enrollment, home & school based instruction

HOW YOU CAN HELP A CHILD RETURN TO SCHOOL

• Treat the child as normally as possible

• Inform yourself!– Web resources– National organizations– Parents– Social workers– Transition liaisons

• Be a resource at your school in addition to the school nurse

THE TRANSITION BACK• Updating or creating 504/IEP• Home/Hospital Instruction options• Partial day or blended program• Medical/Health Plan in place• Informing the classroom/classmates with parent

permission• Being aware of hidden stressors

– Family situations

– Emotional issues

– Fatigue

GOAL

To provide every child an education with

nondisabled children to the maximum extent

appropriate in the least restrictive environment.