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 SCHOOL
AT 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
• 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
• ~10% are deemed
uncorrectable (heart
transplant)
• There are currently 2
million people in the
US with a CHD.
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 FACTS
kidney.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
ABSENTEEISM
Lynch, 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
• Be a resource at your school in addition to the
school nurse
• Treat the child as normally as
possible
• Inform yourself!
–
–
–
–
–
Web resources
National organizations
Parents
Social workers
Transition liaisons
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.