Transcript THE NEVER ENDING STORY * CHILDREN WITH CHRONIC

Children with Chronic Conditions:
Issues for the School Nurse
The Never-Ending Story
Janice Selekman DNSc, RN, NCSN, FNASN
Professor, University of Delaware
What is a chronic condition
• Chronic conditions are those that “last a
year or more and require ongoing medical
attention and/or limit activities of daily
living” (USDHHS, 2011)
Chronic conditions
versus
chronic illness
• Illness means SICK
• And these kids are NOT usually sick
1960’s
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<2% of school population had a chronic condition
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Died before entering school
Weren’t allowed into the school; they had no rights
Their technology was considered in need of ICUs
Considered “fragile”
Hippies
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Sex, drugs, and rock and roll!
Increased sexual activity (peaked in 1991)
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Resulting in premature babies – with problems
Legislation
• 1965 – Education for All Handicapped Children Act
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To become Individuals with Disabilities Education Act
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Individualized Education Programs/ Special Education
• 1973 – Rehabilitation Act
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504 Accommodation Plans
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1980’s and 1990’s
Mental Retardation – wasn’t
Everyone had a Learning Disability
Then everyone had Attention Deficit Hyperactivity Disorder
IDEA (then P.L. 94-142) resulted in mainstreaming, inclusion,
normalization – and closing of institutions
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Supreme Court Cases for the rights of those with chronic conditions
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In 1994, 12.8% of children were said to have a chronic condition
Disability
• What is a disability
• Depends which law you read
• [DO NOT USE THEWORD ‘HANDICAP’]
Chronic Conditions
as per IDEA
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MR (ID)
Hearing/vision impairments
Speech/language impairments
Serious emotional disturbance
Orthopedic impairment
Autism
Traumatic Brain Injury
Learning disability
Other health impairment
What about the rest of the conditions
that are just as chronic
but do not qualify for special education?
Chronic Conditions
• Asthma
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Increased 200% from 1969 – 1995
Now, 14% of children have it at some point; 10% have it now
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African-American children have 200% increased likelihood
of ending up in an ER – compared to Caucasian children
Incidence increases with age
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Especially Hispanic children
6% at age 5
11% at adolescence
131 deaths / year – some in school
ASTHMA INHALER ISSUES
Inhaler Self-carry/Self-administer:
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Is there a self-carry/self-administer assessment
procedure?
Do self-carry students keep a back-up in the office?
Stock Emergency Albuterol:
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Is it legal in your state?
Who writes the standing orders?
Who may it be administered to?
How is mouth piece cleanliness addressed?
How are the inhaler and supplies paid for?
Chronic Conditions
• Allergies
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35% of children have allergies
70% chance if both parents have allergies
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Latex
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40% chance if one parent
Children with Spina Bifida
Nurses
Food/Peanuts
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4% of children have food allergies (but 12% think they do)
• 18% increase in 10 years
• 29% also have asthma
Food Allergy Facts
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8 foods cause 90% of serious allergic reactions
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Milk, eggs, fish, crustacean shellfish, wheat, soy, peanuts, and tree nuts
50%-62% of fatal or near fatal reactions (anaphylaxis) reactions in US
are due to peanuts; 15%-30% due to tree nuts
16%-18% of children with food allergies have had a reaction from
accidentally eating food allergens while at school (CDC)
25% of the severe and potentially life threatening reactions reported at
schools happened in children with no previous diagnosis of food allergy
20% of reactions occurred 4-8 hours after ingestion
Ingestion reactions are more severe than inhalation or skin contact
Reactions are faster on an empty stomach or if exercising
A delay in administering epinephrine is most significant risk factor in
fatal outcomes
Issues for food allergies
• Nut free tables (exclusion, bullying, a table for every
allergy?)
• No home-made or outside foods in the school
• No more parties
• Cleaning of desks/ tables/ toys
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Use soap and water or all-purpose cleaner
Chronic Conditions
• Type 1 diabetes (1:500)
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15,000 diagnosed each year
From 2002-2009, the rate of T1DM increased from 24.427.4/100,000. Especially ages 5-9
• Type 2 diabetes
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6% for non-Hispanic white youth; 76% American Indian youth
Issues with diabetes
• Glucagon
• Having testing supplies and needles on one’s person or in
the teacher’s desk
• Self carry
• Computer programs
• INSULIN PUMPS CAN BE HACKED
• Students bringing the wrong foods from home or
skipping meals
• Lunch at 10:30; sports after school; field trips
Chronic Conditions
• Obesity
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Incidence
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32% above the 85th percentile (overweight)
• Adults = 34%
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17% above the 95th percentile (obese)
• Black children = 24%
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12% above the 97th percentile (extremely obese)
Exacerbates/causes other conditions
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Increased type 2 diabetes – but who is counting?
Sleep apnea
Poorer asthma outcomes
Children already immobile because of their condition
• SKIN CARE
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Cardiovascular disease and hypertension in teens and young adults
Chronic Conditions
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The deteriorating mental health of children
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21% of children and teens meet the diagnostic criteria for having
a mental health condition
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Learning disabilities (9.2%) – but 39% of all those in special
education
Attention Deficit Hyperactivity Disorder [ADHD] (8.6%)
Mood disorders [depression, anxiety, bipolar) (3.7%)
Autism Spectrum Disorder (1:88; 600% increase since 1990)
Significantly high number with co-morbid conditions
Issues with Mental Health
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Should we do mass screening
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For depression, drugs, mental health
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WHERE are the resources
Issues for and with the principal and guidance
counselor/psychologist
Violence and de-escalation
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what is the school nurses role?
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keep everyone safe
be aware of body language, pragmatics, environmental factors
SCHOOL SHOOTINGS – protect yourself (Run, Hide, Fight)
So the 2% in 1960
was 12.8% in 1994
is now 25%-32%
(and 41.8% for adolescents)
(USDHHS, 2011)
In the past 3 years, I have taught
students with the following chronic
conditions (N=1280)
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Attention Deficit Hyperactivity Disorder
93.2%
Asthma
88.5%
Learning Disabilities
78.9%
Allergy (other than food)
76.2%
Food allergy
70.6%
Autism Spectrum Disorder
65.2%
Anxiety Disorder
58.3%
Speech Impairments
56.5%
Depression
49.9%
Diabetes
48%
• Vision disability – 42.1%
• Bipolar disorder – 41.4%
• Significant obesity – 35.7%
• Deaf/ hearing deficits – 34.5%
• Seizure disorders – 34.4%
Notified they will have a student
with a chronic condition (N=1280)
• Are you routinely informed at the start of the school year
that you will have a student in your class with a chronic
condition?
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Yes – 57%; No – 43%
• Who informs you?
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Student = 16.9%; parent = 30.2%; school nurse = 37.7%;
another teacher = 27.4%; counselor/psychologist = 28%;
principal = 15.7%
Communication and Guidance
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The needs of each child with a cc in my classes have been clearly
communicated to me
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Grades 1-2: 44.4% indicated never or rarely
Grades 3-5: 40.5% indicated never or rarely
Grades 6-8: 48.3% indicated never or rarely
Grades 9-12: 52.7% indicated never or rarely
The school nurse provides guidance about children with chronic
conditions in my class
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Grades 1-2: 33.1% indicated never or rarely
Grades 3-5: 28.6% indicated never or rarely
Grades 6-8: 32.8% indicated never or rarely
Grades 9-12: 41.5% indicated never or rarely
Factors that most concern you
about your students with chronic
conditions (N=1280)
Concern/grade
1-2
3-5
6-8
9-12
High absenteeism rate
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Student with a CC is underperforming in school
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Behavior issues
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Poor concentration
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Student fatigue/ low energy
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Failure to complete daily
assignments
6/7
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Rejection/ bullying
6/7
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Impact of chronic conditions on children
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HABILITATION rather than REHABILITATION
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Always trying to achieve something – never quite there
May have never known life without their cc; it is
part of them
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May want to be normal; may see themselves as normal
Impact on their growth and development
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What is the child missing out on? (camp, sleep overs,
exploring)
Does the child have privacy?
Is the child allowed some independence?
How do you teach good touch-bad touch – if people
are always touching them to do invasive skills?
Are there sexuality needs being met?
Are there nutritional needs being met?
Impact of chronic conditions on children
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What is the impact of chronic pain? How much is too much?
Impact on the family (remember siblings and grandparents)
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Money [highest per child expense = mental disorders]
Vacations
Estate planning
Nurses in the home
Transition planning – at all levels
Impact on education
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Hospitalizations
Treatments
Psychological reactions
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Bullying
Being different
How do I deal with people labeling me as my disorder (person
first language)
Person-First Language
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The child with…….
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NOT – the cystic, the asthmatic, the diabetic
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They are NOT their condition
Rosa’s Law – use Intellectual Disability rather than MR
IEPs and 504s
• Individuals with Disabilities Education
Improvement Act (IDEA)
• Free and appropriate education in the least
restrictive environment
• Special education and related services
• Individualized Education Program
• Nursing should be part of MOST IEPs
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Section 504 of the Rehabilitation
Act
IF otherwise qualified…. (must be accepted, hired, …)
Prevents discrimination against those with disabilities
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To safely access the learning environment (field trips, meals, transportation)
Reasonable accommodations
504 Accommodation Plan
Federal law but NO federal money behind it
Does not need special education to receive aids/services or procedures to
ensure equal opportunity to participate and
School nurse is the student’s advocate
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ISSUE: How to advocate when the ‘team’ feels the student is doing well
academically without accommodations
Medicaid
• Medicaid reimburses schools for services provided under
IEPs, including nursing services
• ISSUE: WHO GETS THE MONEY
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General fund?
Nursing positions?
To the school?
MEDICAID BILLING
CONSIDERATIONS
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Does the district have a provider agreement
with the state's Medicaid Plan?
Has parent signed consent for billing Medicaid?
Are students enrolled in Medicaid?
Are the services covered under the state's
Medicaid Plan.
Are the services listed on the student's IEP or
part of a special education evaluation?
Are the services provided by a registered nurse.
Does the district keep records of services
provided?
IHP
• IHP is developed BY the nurse FOR the nurse
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“Developed for those whose healthcare needs affect or have the
potential to affect safe and optimal school attendance and
academic performance” (NASN)
Not legally mandated but considered the standard of care
Cannot be delegated; only RN can implement and evaluate
Provides legal documentation in courts of law
Serves as foundation for the health portion of other plans
Impacts on Medicaid reimbursement
Emergency Action Plan; Emergency Care Plan
•Developed BY the NURSE for school
faculty and staff
•Is based on the IHP
•Consists of clear action steps “if you
see this, do that”
IEP/504/Student Teams
• ISSUE: they don’t want me to attend; they don’t think I
have anything to add to the discussion
• ISSUE: I don’t have the time to attend
ISSUES
• Field trips/ after school or away-from-school activities
• 1:1 care providers
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School nurse is responsible for ALL students in the school
If a 1:1 is hired, Write out responsibilities; at minimum, should
receive a daily report
Who is the supervisor; who do you call in emergencies?
Who writes/reviews/revises the IHP?
Does the HIPAA Privacy Rule allow a healthcare
provider to disclose protected health
information about a student to a school nurse?
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Yes. The HIPAA Privacy Rule allows covered health care providers to
disclose PHI about students to school nurses, physicians, or other
health care providers for treatment purposes, without the
authorization of the student or student’s parent. For example, a
student’s primary care physician may discuss the student’s
medication and other health care needs with a school nurse who will
administer the student’s medication and provide care to the student
while the student is at school. In addition, a covered health care
provider may disclose proof of a student's immunizations directly to a
school nurse or other person designated by the school to receive
immunization records if the school is required by State or other law
to have such proof prior to admitting the student, and a parent,
guardian, or other person acting in loco parentis has agreed to the
disclosure. See 45 CFR 164.512(b)(1)(vi). Updated 09/19/13
FERPA CONSIDERATIONS
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Covers school health records
What are you keeping in the school health record?
Need to know vs nice to know
Does it guide evaluating, planning, providing care?
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Obtained out of curiosity?
Who to tell?
Teachers/staff (need to know information only)
Classmates/peers (with parent permission)
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May share with receiving school without parent consent
Requesting records
Is agency under HIPAA? Use proper release of info form
What teachers want…
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What conditions do the children in my class have
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Please tell me as soon as you find out
Give me the basics about that condition so I do not have to find it in
unreliable places
What signs am I looking for that tell me the student is in trouble (EAP)
What do I do about it until help comes and why (EAP)
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Give me real scenarios and what to do
Tell me about FERPA. What can I share and what can’t I share?
What works in the classroom for this child? (IEP/504)
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How do I read an IEP and which students have them
How do I advocate for a 504 and what should go into it?
Be there for me to decrease my stress.
Medication issues
• Intranasal versed
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No difference from rectal diazepam r/t side effects
Costs $12 vs. $212-$371
More socially acceptable
Requires nasal atomizer; HALF IN EACH NARES
Weight based medication (0.2mg/kg; no >10mg)
Concern about black box warning
EVACUATION PLANS
• Which students?
mobility issues, life-threatening health problems
medical procedures, vision/haring problems
• Who writes them?
PT, RN, case manager, supervisor
• Who implements them?
teacher, classroom staff, building support staff
• Where to keep plans?
with: student, case manger, administration, IHCP
EVACUATION CONSIDERATIONS
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What medications are critical to take?
What treatment/procedure supplies are
critical to take?
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How much oxygen is needed?
What communication devices are needed?
What mobility obstacles exist?
What written instructions/orders must be
taken?
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How will special needs students be identified?
Those who work with children with
chronic conditions…..usually….
• Focus on the skills that need to be done
• Focus on the meds that must be given
• Focus on whatever needs to be taught to the patient
• Focus on the therapies and related services that are
needed
• Play nurse-navigator/ case-manager to coordinate care
And in the hospitals…..
How do we approach their care?
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NICU – 4 pounds and home
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ER – treat them and street them
Acute units – unless you came in for your chronic condition, it is
ignored
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ASSESS their development from 0-3 years
Only get paid for what brought you to the hospital
Clinics – check in, ASSESS status, and go home
When do you say to a parent…
• How is this condition affecting you now?
• What changes have you had to make in your daily life?
• What preparations have you made for the next few
years?
• What are you doing to take care of yourself?
• What advice could you give me to help others who have
this condition?
When do you say to the child…
• Now that you are older, what adjustments have you had
to make because of your condition?
• What strengths have you found you had
because of this condition that you didn’t know
you had?
• What would you tell another child who was just
diagnosed with this condition to help them be successful?
When do you tell them how special
they are?
Acknowledge their strengths?
Support their hopes and dreams?
Say to them, “I like you
just the way you are”!
Have you asked yourself…
• Who are these kids?
• What is their life like?
• What is life like for their parents?
• What really happens in the home setting?
• Does anybody care?
Welcome to Holland
by Emily Perl Kingsley
What does the parent experience?
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Will my child ever be normal?
When will this end?
When will there be time for me?
If people know what’s really going on, how will they treat him?
Will he have any friends?
Have I made the right decisions?
What happens when I am too old or frail to care for him?
I am always comparing my child to others of his age….
Your role….is to stop
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Be aware of ALL of their needs
Be their advocate
Tell them their rights and resources
Document their needs
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Use person-first language – it is the LAW
Tell the parents what a great job they are doing
Remember that it is a chronic condition and NOT a chronic illness
(Most of them are not sick)