PUMPING INSULIN AT SCHOOL
ADA Safe at School Campaign:
Your Child, Your School, and
Your Rights
Crystal Jackson, Manager, Legal Advocacy
American Diabetes Association
Government Affairs & Legal Advocacy
Spring 2007
www.diabetes.org
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ADA MISSION
TO PREVENT AND CURE DIABETES
AND TO IMPROVE THE LIVES OF ALL
PEOPLE AFFECTED BY DIABETES
www.diabetes.org
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WHO IS DISCRIMINATED AGAINST
BECAUSE OF DIABETES?
Children and adults with diabetes in school and day care
centers, the workplace, correctional facilities and in contact
with police, and in access to places of public accommodation
Bailey Boxall
www.diabetes.org
Jim Radermacher and family
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ADA SAFE AT SCHOOL CAMPAIGN GOALS
Children with diabetes are
medically safe at school
Children with diabetes have the
same access to educational
opportunities as do other children
www.diabetes.org
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SAFE AT SCHOOL CAMPAIGN PRINCIPLES
All school staff members need to have a basic
knowledge of diabetes and know who to contact
for help.
What Is
Diabetes
School nurse is primary provider of diabetes care,
but other school personnel must be trained to
perform diabetes care tasks when the school nurse
is not present.
Students should be permitted to provide
self-care whenever they are at school or
school-related activities.
www.diabetes.org
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SAFE AT SCHOOL PRINCIPLES ENDORSED BY:
American Academy of Pediatrics
American Association of Clinical Endocrinologists
American Association of Diabetes Educators
American Diabetes Association
American Dietetic Association
Children With Diabetes
Disability Rights Education and Defense Fund
Juvenile Diabetes Research Foundation
Lawson Wilkins Pediatric Endocrine Society
Pediatric Endocrinology Nursing Society
www.diabetes.org
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Goals for School Diabetes Care
• Schools must provide a
medically safe
environment for
students with diabetes.
• Students with diabetes
must have the same
access to educational
opportunities and
school-related activities
as their peers.
www.diabetes.org
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TEAM APPROACH TO ACHIEVE
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Parent
Student
Student’s health care provider
School nurse as facilitator and coordinator of
care
• School administrator
• Teachers
• Other school personnel
www.diabetes.org
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Legal Protection of Students
with Diabetes:
Federal Laws
• Section 504 of the Rehabilitation Act of 1973
(Section 504)
• Americans with Disabilities Act (ADA)
• Individuals with Disabilities Education Act
(IDEA)
www.diabetes.org
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What’s The Difference?
• Section 504: students attending public and private
school receiving federal funds covered; the major life
activity substantially limited does not need to be
learning.
• ADA: same as 504, except covers daycares and
camps; does not cover religious affiliated
schools/programs unless federal funds received.
• IDEA: special ed law; must demonstrate that diabetes
or another disability adversely impacts ability to learn
and to progress academically.
www.diabetes.org
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Section 504
• A civil rights law that prohibits discrimination on
the basis of disability.
• Who is covered? Child with a physical or mental
impairment that substantially limits one of more of
major life activities, has a record of such an
impairment, or is regarded as having such an
impairment.
• What schools? All public schools and private
schools that receive federal financial assistance.
www.diabetes.org
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What Does This Mean?
Schools must:
• Identify students with disabilities
• Provide needed services and aids
• Educate with other children
• Allow parental participation in decisions
• Equal access to participation
• Treat students with fairness
• No retaliation
www.diabetes.org
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Substantially Limits …
• Unable to perform (at all)
• Significantly restricts ability
to perform
www.diabetes.org
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Major Life Activities
• Caring for one’s self
• Breathing
• Performing manual tasks
• Learning
• Eating
• Working
• Walking
• Speaking
www.diabetes.org
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Evaluation Required
Schools must conduct an evaluation if
suspected in need of special education or
related services or if requested by parent.
www.diabetes.org
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Section 504 Requires
Evaluation Meeting
Evaluation must be made by a group of
persons who are:
• Knowledgeable about your child
• Knowledgeable about the evaluation data
• Knowledgeable about services options
Upon determination of 504 eligibility,a Section
504 Plan is developed by school team
www.diabetes.org
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What is a Section 504 Plan
A written document where the
parents and school agree on
the services and modifications
that the student needs.
Each child with diabetes has
individual needs.
A Section 504 Plan must be
individually developed.
www.diabetes.org
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Possible 504 Plan Contents
Related To Pumping
• Identify trained school personnel
• Training contents and when trained
• Child independent or need assistance?
• Allow to bolus on the spot if independent
• Allow to keep insulin and supplies with student
• Privacy if desired
• Safe-keeping and storage if pump is disconnected (P.E.)
www.diabetes.org
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DMMP
• Document developed and signed by your child’s
health care provider.
• Sets out your child’s school diabetes care regimen.
• Used as a basis for development of Section 504
Plan or other written education plan.
• Should be updated annually or if your child’s
regimen, level of self-management, or school
circumstances change.
www.diabetes.org
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Pump Specifics
• Type of pump
• Type of insulin
• Basal rates
• Type of infusion set
• Level of self-care
• Identify when assistance will be needed
• Identify circumstances in which infusion set should be
changed
• Other insulin delivery method if pump is inoperable
www.diabetes.org
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DMMP Insulin Regimen
• Type of insulin
• Administration time
• Insulin to carb ratio
• Correction factor
• Bolus calculator and/or sliding scale
• Authorization for parent to adjust doses
without hcp approval
• Level of self-care
www.diabetes.org
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Assistance Needed?
• Carb counting
• Calculate bolus for carbs and correction
• Calculate and set basal rates (incl. temporary)
• Push buttons – especially for younger children
• Disconnect/reconnect/suspend/resume pump
• Prepare reservoir and tubing
• Insert infusion set
• Troubleshoot alarms and malfunctions
www.diabetes.org
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Supplies Provided by Parent
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Blood glucose meter, strips, lancet with lancet device
Blood/urine ketone strips
Insulin syringes/insulin pen
Insulin – vial, cartridge
Pump cartridge, reservoir
Pump infusion sets and inserter if used
Pump batteries
Glucagon emergency kit
Quick-acting form of carb such as fruit juice, glucose tabs
Snacks
Pump resources such as manual, DVD, alarm card
www.diabetes.org
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A Word About CGMS
• Agreement on response to alarms
• Confirm blood glucose results with fingerstick
before taking any action
• Receiver is not a pager or cell phone-needs
to be kept close by or on student
• Educate personnel about CGMS and what
they can expect
• Write into DMMP and 504 plan
www.diabetes.org
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Implementation of DMMP
Implement through written education plan –
usually a Section 504 Plan, but sometimes an
Individualized Education Program (IEP), or
other written plan.
www.diabetes.org
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Common School Diabetes
Care Challenges
•
Lack of trained back-up personnel
•
Lack of knowledge by school nurse and other school staff
•
“Old school” thinking about diabetes care
•
Refusal to administer insulin, glucagon, bgm
•
Fear of newer technology such as the pump
•
Lack of coverage for field trips and extracurricular activities
•
Refusal to permit student self-care on the spot
•
Sending child to “diabetes school”
•
Refusal to enroll child
www.diabetes.org
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ADA MANTRA
Accomplish through education, negotiation,
litigation, legislation.
• Educate school personnel about diabetes and legal
obligations.
• Negotiate using resources such as NDEP school guide,
ADA resources, and pump companies.
• Litigate if necessary – OCR, due process, state court,
federal court.
• Legislate if all else fails and clear legal barriers exist.
www.diabetes.org
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EDUCATE SCHOOL PERSONNEL
• Diabetes Basics
What Is
Diabetes
• Skill instruction for diabetes care tasks
• School district policy, federal
and state laws
www.diabetes.org
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Insulin Pump Challenges:
Educate to Overcome
• Fear and ignorance
• Perception that pumping is complicated
• Perception of increased responsibility and workload
for school nurse and other school personnel
• Fear of damaging pump
• Resistance to learning about operation of
equipment
• Concern that younger children will push buttons
and accidentally dose
www.diabetes.org
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www.diabetes.org
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RESOURCES YOU CAN USE
NDEP “Helping the Student with
Diabetes Succeed: A Guide for
School Personnel”:
www.diabetes.org/discrimination
click on “school”, click on “NDEP’s:
Helping the Student…”
A comprehensive guide developed by
key federal government agencies,
diabetes and educational organizations
to educate school personnel about
diabetes management at school.
www.diabetes.org
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RESOURCES YOU CAN USE
ADA Diabetes Care Tasks at
School: What School
Personnel Need to Know:
www.diabetes.org/schooltraining
Training modules to be used by
health care professionals to train
school nurses and other school
personnel in diabetes care tasks.
www.diabetes.org
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RESOURCES YOU CAN USE
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ADA Education discrimination packets and individual help at
1-800-DIABETES for your patients
ADA Discrimination Web Page:
www.diabetes.org/discrimination click on “school”
Your School & Your Rights
Overview of how to protect students with diabetes against
discrimination by schools and day care centers.
Education Discrimination Materials
Collection of school advocacy materials to assist families in
securing appropriate diabetes care at school.
School Legislative Efforts
State school diabetes care laws to protect students with
diabetes.
School Discrimination Resources
Organizations and agencies that can provide assistance to
families in securing appropriate school diabetes care.
www.diabetes.org
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Scientific Support
• Darby, Wendy, CRNP, PhD: The Experiences
of School Nurses Caring for Students
Receiving Continuous Subcutaneous Insulin
Therapy: Journal of School Nursing: Vol. 22,
Issue 6, Pages 336-344.
• School nurse fear of pumping can be
overcome with education, resources, and
hands-on experience.
www.diabetes.org
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Sci-Support – Acute
Complications
• Arleta Rewer, MD, et al (Barbara Davis
Ctr): Predictors of Complications of
Children withType 1 Diabetes: JAMA,
Vol. 287, No. 19, 5/15/02.
• Ketoacidosis – 8 per 100
• Severe hypoglycemia – 19 per 100
www.diabetes.org
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More Scientific Support
• Helms, MA, Clarke WL.: Safe at
School: A Virginia Experience: Diabetes
Care, March 10, 2007 (Epub).
• Safe care can be delivered by trained
medical and non-medical personnel.
www.diabetes.org
1-800-DIABETES
NEGOTIATE
•
Use ADA’s, pump company’s, and other resources
to negotiate with school administrators
•
Use knowledge of student’s rights,
materials, and DMMP, IHP, and
504 as negotiating tools
•
Collaboration to develop materials and
guidelines with other organizations
•
Coalitions i.e. PTA, AADE, AAP
www.diabetes.org
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Overcoming School Pumping
Challenges: Negotiate
•
Work with your child’s diabetes health care team to develop
Diabetes Medical Management Plan (DMMP) or physician’s orders
before school begins.
•
Set up meeting with school personnel before school begins so
everyone understands your child’s diabetes needs and how
needs will be met.
•
Address insulin pump protocols and concerns in a Section 504
plan or other written education plan.
•
Provide school with supplies, snacks, and current emergency
contact information.
•
Work with your school nurse to arrange for pump company to
provide training to school personnel.
www.diabetes.org
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How to Litigate?
• File complaint with U.S. Department of Education,
Office of Civil Rights.
• School district or state due process/grievance
procedure/hearing.
• File complaint in state court.
• File complaint in federal court.
www.diabetes.org
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Litigate: Office Of Civil Rights (OCR)
• Division of U.S. Department of Education
responsible for enforcing Section 504
• Complaint must be filed within 180 days of alleged
discrimination to initiate process
• OCR will investigate
• Settlement agreement – Commitment to Resolve
• Henderson, NC CTR required school to train
personnel on pump
www.diabetes.org
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Legislate
• Legislate after attempts to educate,
negotiate, and litigate have not been
successful.
• Consider changing state law if current laws
and policies do not provide students with
diabetes the protection they need.
• Realize that systems change slowly.
Patience and perseverance required.
www.diabetes.org
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School Policies, State Laws
and Regulations
• Vary from state to state, district to district, school to
school.
• Sometimes sets out who can perform medical tasks.
• Regardless, there must be compliance with federal laws.
• Some states have passed school diabetes care
legislation.
www.diabetes.org
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State Laws
•
California
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North Carolina
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Colorado (BON
regulatory change)
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Oregon
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South Carolina
Connecticut
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Tennessee
Hawaii
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Texas
Kentucky
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Utah
Massachusetts
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Virginia
Montana
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Washington
Nebraska
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West Virginia
Nevada (BON
regulatory change)
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Wisconsin
www.diabetes.org
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SCHOOL DIABETES LEGISLATION PENDING IN:
Oklahoma
Massachusetts
Illinois
Tennessee
New Jersey
Indiana
Rhode Island
Pennsylvania
Alabama
“Advocate for children with diabetes at local, state and national levels.”
Sign up at the ADA Action Center: www.diabetes.org/advocacy
Send an email to Crystal Jackson at cjackson@diabetes.org
www.diabetes.org
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CALIFORNIA
• Law passed in 2003
• Trained volunteers may administer
glucagon
• Student self-care anywhere, anytime
permitted
• Development of glucagon training
guidelines by CADPCP
www.diabetes.org
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CALIFORNIA RESOURCES
• California Department of Social Services Policy Bulletin for
glucagon administration in child care setting
http://www.diabetes.org/uedocuments/cacbulletinglucagon.pdf
• Glucagon Training Standards for School Personnel: Providing
Emergency Medical Assistance to Pupils with Diabetes
http://web.diabetes.org/Advocacy/school/glucagon.pdf
www.diabetes.org
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SAS Campaign
WE NEED YOU!
• Impact local policy
• Help other parents
• Create awareness in your community
• Register to become a SAS advocate
at http://advocacy.diabetes.org
www.diabetes.org
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Pump Manufacturers
•
Animas Corporation
1-877-YES-PUMP (937-7867)
www.animascorp.com
•
Roche – Disetronic/Accu-chek Spirit
1-800-280-7801
www.disetronic-usa.com
•
Medtronic MiniMed, Inc.
1-800-MINIMED (646-4633)
www.minimed.com
•
Cozmo – Smiths Medical MD
1-800-826-9703
www.cozmore.com
•
Dana Diabecare USA
1-866-326-2832
www.theinsulinpump.com
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Nipro Diabetes Systems - Amigo
1-888-651-PUMP
www.niprodiabetes.com
www.diabetes.org
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ADA Youth Initiatives
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Safe at School Campaign
National Youth Advocate
Camp
Family Resource Network (SD mtg on
4/21)
• WIZDOM
• SWFD
www.diabetes.org
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Safety + Access = School Success
www.diabetes.org
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