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- 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.
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- 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.
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- 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.
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- 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
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- 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.
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- Section 504 of the Rehabilitation Act of 1973 (Section 504)
- Americans with Disabilities Act (ADA)
- Individuals with Disabilities Education Act (IDEA)
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- 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.
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- 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
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- 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
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- 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.
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- 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.
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- 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
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- 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
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- 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
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- 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
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- Implement through written education plan – usually a Section 504 Plan.
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- 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.)
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- 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.
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- 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
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- 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.
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- 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.
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- California
- Connecticut
- Hawaii
- Kentucky
- Massachusetts
- Montana
- Nevada (BON policy decision)
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- 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)
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- WE NEED YOU!
- School legislation – NJ, NY, PA, RI. Contact Steve Habbe at
SHabbe@diabetes.org
- 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
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- 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?
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- 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
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- Animas Corporation
- 1-877-YES-PUMP (937-7867)
- www.animascorp.com
- Medtronic MiniMed, Inc.
- 1-800-MINIMED (646-4633)
- www.minimed.com
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