All school staff members need to have a basic knowledge of diabetes and know who to contact for help.
All school staff members need to have a basic knowledge of diabetes and know who to contact for help.
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
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
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.
TEAM APPROACH TO ACHIEVE
Parent
Student
Student’s health care provider
School nurse as facilitator and coordinator of care
School administrator
Teachers
Other school personnel
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)
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.
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.
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
Substantially Limits …
Unable to perform (at all)
Significantly restricts ability to perform
Major Life Activities
Caring for one’s self
Performing manual tasks
Eating
Walking
Evaluation Required
Schools must conduct an evaluation if
suspected in need of special education or related services or if requested by parent.
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
A written document where the parents and school agree on the services and modifications that the student needs.
A written document where the parents and school agree on the services and modifications that the student needs.
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.)
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.
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
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
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
Supplies Provided by Parent
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
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
Implementation of DMMP
Implement through written education plan – usually a Section 504 Plan, but sometimes an Individualized Education Program (IEP), or other written plan.
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
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.
Diabetes Basics
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
ADA Education discrimination packets and individual help at 1-800-DIABETES for your patients
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.
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.
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
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.
Use ADA’s, pump company’s, and other resources to negotiate with school administrators
Use ADA’s, pump company’s, and other resources to negotiate with school administrators
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.
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.
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
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.
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.
State Laws
California
Colorado (BON regulatory change)
Connecticut
Hawaii
Kentucky
Massachusetts
Montana
Nebraska
Nevada (BON regulatory change)
CALIFORNIA
Law passed in 2003
Trained volunteers may administer glucagon
Student self-care anywhere, anytime permitted
Development of glucagon training guidelines by CADPCP
CALIFORNIA RESOURCES
California Department of Social Services Policy Bulletin for glucagon administration in child care setting
