Www.diabetes.org 1-800-DIABETES PUMPING INSULIN AT SCHOOL ADA Safe at School Campaign: Your Child,...

www.diabetes.org 1-800-DIABETES

PUMPING INSULIN AT SCHOOL

ADA Safe at School Campaign: Your Child, Your School, and

Your Rights

Crystal Jackson, ManagerAmerican Diabetes Association

Government Affairs & Legal Advocacy

March 2006


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.


ADA MANTRAAccomplish 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.


ADA Safe at School Campaign Statement of Principles

• All school staff members need to have a basic knowledge of diabetes and know who to contact for help.

• School nurse is primary provider of diabetes care, but back-up school personnel must be trained to provide care when school nurse is not available.

• Students who are able to do so should be permitted to self-manage their diabetes wherever they happen to be – classroom, auditorium, cafeteria, athletic field, school bus.


SAS Endorsers to Date• American Academy of Pediatrics• American Association of Clinical Endocrinologists• American Association of Diabetes Educators• American Dietetic Association• Children with Diabetes• Juvenile Diabetes Research Foundation• Lawson Wilkins Pediatric Endocrine Society• Pediatric Endocrine Nursing Society


How Does SAS Work?• Educate, negotiate, litigate and legislate• Educate parents about legal rights through materials,

direct assistance, and workshops.• Educate and negotiate with educators and school

nurses through resources and training.• Litigate when necessary (Kindercare, CA lawsuits)• Effect policy change at state level (legislation) and

local level (school board).• Build grassroots support (parents and caregivers like

you!) to educate and lobby policy decision makers.• Coalition building to support policy change efforts.


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; major life activity impacted 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.


Common School DiabetesCare Challenges

• Lack of trained back-up personnel

• 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


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


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.


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.


DMMP Insulin Regimen• Type of insulin

• Administration time

• Insulin to carb ratio

• Correction factor

• Sliding scale

• Authorization for parent to adjust doses without hcp approval

• Level of self-care


Pump Specifics• Type of pump

• 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


Assistance Needed?• Carb counting

• Amount of bolus for carbs and correction

• Calculate and set basal rates (incl. temporary)

• Calculate and set boluses

• Disconnect/reconnect/suspend/resume pump

• Prepare reservoir and tubing

• Insert infusion set

• Troubleshoot alarms and malfunctions


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


Implementation

Implement through written education plan – usually a Section 504 Plan.


Possible 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.)


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 to initiate process

• OCR will investigate

• Settlement agreement – Commitment to Resolve

• Henderson, NC CTR required school to train personnel on pump


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.


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.


State Laws• California

• Connecticut

• Hawaii

• Kentucky

• Massachusetts

• Montana

• Nevada (BON policy decision)

• North Carolina

• Oregon

• South Carolina

• Tennessee

• Texas

• Virginia

• Washington

• Wisconsin


2006 School Legislation Efforts• Michigan - comprehensive• Nebraska - self-care• New Jersey - comprehensive• New York - glucagon• Oklahoma - comprehensive• Pennsylvania - comprehensive• Rhode Island - glucagon• Utah – glucagon (passed both Houses, waiting for

Governor’s signature)


SAS Campaign WE NEED YOU!• School legislation – NJ, NY, PA, RI. Contact

Steve Habbe at [email protected]

• Impact local policy

• Help other parents

• Create awareness in your community

• Are you a PTA member?

• Sign the petition to show your support

• Register to become a SAS advocate at http://advocacy.diabetes.org


Other Current ADA Advocacy Initiatives

• Call to Congress in Washington, DC June 7-9. Register on ADA website. Submit quilt square to CWD to be displayed on the Mall.

• ADA school advocacy train-the-trainer workshop at CWD’s “Friends for Life.” Open to FFL attendees.

• Volunteer Attorney Network development. Interested? Know someone who is interested?


Resources• NDEP: Helping the Student with Diabetes Succeed: A

Guide for School Personnel

• Diabetes Care Tasks at School:What Key Personnel Need to Know (ADA) www.diabetes.org/schooltraining

• Legal Rights of Students with Diabetes http://www.diabetes.org/advocacy-and-legalresources/attorneymaterials/legalrights.jsp

• 1-800-DIABETES and www.diabetes.org

• www.childrenwithdiabetes.com


Pump Manufacturers

• Animas Corporation1-877-YES-PUMP (937-7867)www.animascorp.com

• Medtronic MiniMed, Inc.1-800-MINIMED (646-4633)www.minimed.com

• Disetronic Medical Systems, Inc.1-800-280-7801www.disetronic-usa.com

• Deltec Cosmo1800-826-9703www.deltec.com


Safety + Access = School Success

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