1. KEEPING KIDS WITH DIABETES SAFE AT SCHOOL
Crystal Crismond Jackson
Director, Safe at School
American Diabetes Association
Friends for Life
Orlando, Florida
July 3, 2014
Linda to begin program. Tell about yourself and then Crystal can describe her background when she speaks.

2. This activity is supported by an unrestricted educational grant from Novo Nordisk.
The workshop is supported by an unrestricted educational grant from Novo Nordisk.

3. “to improve the lives of all people affected by diabetes.”
Mission
To prevent and cure diabetes and improve the lives of all people affected by diabetes
We deliver mission through:
Research
Information & Support
Advocacy & Public Awareness
Our primary goal today is to talk with you about ADA Safe at School strategies and resources; however, before we get to that, I want to give a very quick view of the many ways that ADA works both for cure and care - improving the lives of children with diabetes everyday. Let’s start with the ADA mission statement.:
“To prevent and CURE diabetes…. As a parent, no word in the entire mission statement speaks
louder or has more hope than the word “Cure.”
I know that each of you in the room knows exactly what I’m saying in a very personal, often poignant, way. For me, the word CURE has been a point of hope for X years, since my X <insert name>, was diagnosed at the age of X.
But, as much as I want a cure for my child and the millions of others with diabetes, I need to acknowledge my strong belief and commitment to the rest of the ADA mission statement,
“to improve the lives of all people affected by diabetes.”
To me ‘improving lives’ is equally important, because while I continue to HOPE that ‘the cure is right around the corner,’ as I was told in when my child was diagnosed in XXX, I know that how s/he manages diabetes today will affect his quality of life until a CURE is found. I am very grateful that <insert name> has been able to participate in ADA summer camp, that ADA Safe at School resources were available to help when his school limited his access to adequate care, and that ADA funded and published research has greatly improved the technologies and insulins he uses now in day to day management.
ADA delivers mission through three primary areas. Research, Information & support, and Advocacy and Public awareness.
Tonight’s program will focus upon advocacy – namely the Association’s Safe at School campaign and how the campaign can help you to prepare to send your child with diabetes back-to-school with the comfort of knowing his or her diabetes needs will be safely met. 3

4. ADA Youth Initiatives Safe at School Campaign CAMP
Everyday Wisdom Kit for Newly Diagnosed
The Association delivers it mission to children and their families through its :
Safe at School Campaign – which will be the focus of tonight’s program. Our Safe at School efforts help parents to make sure their child’s diabetes needs are met in the school setting and that children with diabetes are treated fairly.
Camp – I am sure many of you have children who attended an Association diabetes camp this past summer. If your child hasn’t gone to one of our camps I strongly encourage you to check it out.
Our National Youth Advocate who is chosen every year to be the Association’s young ambassador for diabetes advocates.
The Associations’ free Wisdom Kit that is available to families of newly diagnosed children by calling DIABETES.
Tonight we are going to focus on Safe at School.
National Youth Advocate

5. Session Key Points Back-to-school considerations
Safe at School Campaign
School diabetes care challenges
Federal and state laws
Development of 504 and strategies to overcome challenges
Resources
Tonight we will cover the following topics …
Back-to school considerations and realities of diabetes at school
Safe at School Campaign goals and principles
Federal and state legal protections for children with diabetes
Development of 504 and health care plans
Key school diabetes care challenges and strategies to overcome challenges
Resources to help parents educate and negotiate to get what is needed to make sure their child is safe at school 5

6. 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.
Schools must work with parent and student to support transition to independence.
As parents of children with diabetes, we know it is important for our kids to have their diabetes management needs met to keep them safe and healthy in the classroom and at all school-sponsored events and activities.
Here are three major goals for school diabetes care:
Schools must provide a medically safe environment for our children.
Our children must have the same access to educational and school-related activities as their classmates without diabetes.
School and parents need to work together to support our child’s gradual transition to independence as we all know that diabetes is a self-managed chronic condition.
(You may want to provide an example of how these goals are achieved such as classroom blood glucose monitoring).

7. School Best Practice Components
Blood glucose monitoring
Recognition and treatment of hypo and hyper
Insulin/medication administration
Carbohydrate intake/accurate calculation
Self-management permitted for capable students
Diabetes care should be the same at school as it is at home to ensure smooth, healthy and safe transition from home to school
Best practice at school includes a number of required components. Some of the most important and critical components are:
Your child’s access to blood glucose monitoring – being allowed to self-monitor or having the school nurse or another trained adult available to help your child if he or she cannot check his or her blood glucose on their own.
School staff members who have responsibility for your child – whether it be your child’s music teacher or the cafeteria worker - should be trained to recognize and treat or know how to get help to address both low blood glucose and high blood glucose.
Your child should have access to insulin and other diabetes medication. Some kids are able to self-administer insulin while others will need to help or may actually need a school nurse or trained adult to administer insulin.
Many school districts provide carbohydrate and nutritional information on their website. If your school district doesn’t work with your school nurse and food service manager to obtain this information and to make it available to families.

8. What is Needed to Achieve
Availability of trained personnel and/or school nurse
Access to immediate routine and emergency treatment
Self-management and self-possession anywhere, anytime for mature and capable students
Optimal blood glucose range for test-taking
Full participation in all school-sponsored activities
Blood glucose in target range for exams
These are some examples of what your child needs in place at school in order to be safe, healthy and best positioned to achieve academic success.
In order to be safe at school we parents must work with our child’s school to make sure our kids have:
Access to trained personnel who can provide both routine care (bgm, insulin) and emergency care (recognition and treatment of lows and highs). Unfortunately, the school nurse cannot be in all places at all times so other school staff members need to be prepared to help your child.
Be allowed to self-manage anywhere, anytime (including blood glucose checks and insulin administration) if capable of doing so. This includes the student having the ability to carry supplies, equipment, medication and food and not being required to go to the clinic to access these items.
Be able to fully participate in ALL school sponsored activities with trained personnel on site to meet your child’s diabetes needs as outlined by your child’s written care plans
High blood glucose and low blood glucose can impact academic performance. Your child should be allowed to take exams at alternate times if his or her blood glucose levels are out of his blood glucose target range

9. We Know That……. Diabetes care is 24/7
Child with diabetes cannot take a break
Smooth transition from home to school is essential
Child must have access to equipment, medication, and assistance is essential
Written care plans are essential, as provided for by federal and state laws
As a parent/guardian, you want to develop written plans for your child that take the following considerations into account:
Diabetes care for all children, is a constant 24/7 and is necessary in order for children to thrive and to avoid potentially life-threatening complications. This includes the many hours children spend at school, on field trips and at extra-curricular activities.
Diabetes does not take recess so children cannot take a break from their diabetes when they board the school bus in the morning.
Parents/guardians should work with the school nurse to ensure that they have the education, equipment, supplies, medication and food needed to take care of their child.
In order to ensure this smooth transition from home to school, children need access to supplies, equipment, and medication. Also, depending upon your child’s ability to provide self-care the appropriate level of assistance from the school nurse and other trained staff is essential.
How your child’s needs should be met in the school setting should be set out in written care plans such as the Diabetes Medical Management Plan or physician’s orders AND a Section 504 Plan or IEP that we will touch upon later in our presentation.

10. A Word About School Nurses….
ADA supports goal of full time nurses.
However:
Most schools do not have a full-time school nurse.
Even a full-time school nurse is not at all places at all times.
The needs of students with diabetes must be met.
ADA supports a safe model that utilizes trained school personnel in the absence of a school nurse.
The American Diabetes Association supports every school having a full-time school nurse.
However, we also recognize of a couple of very important realities:
Most schools do not have a full-time school nurse.
Even where schools have a full-time school nurse, s/he cannot possibly be at all places at all times.
School nurses usually do not go on field trips or stay after school for extracurricular activities so another trained staff member needs to be available on-site.
Given these realities, it is vitally important that providing both the routine care and emergency care of students with diabetes is a shared responsibility, with the school nurse as the coordinator of care, case manager and coordinator and/or trainer of other school personnel so others are prepared to help your child with his or her diabetes management in the school setting. 10

11. Safe at School Campaign
All school staff members need to have a basic knowledge of diabetes and know who to contact for help.
The 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.
ADA’s Safe at School Campaign is based on three principles regarding diabetes management in school:
1) All school staff members need to have a basic knowledge of diabetes and know who to contact for help. At a minimum everyone who has custodial responsibility for your child should understand diabetes and know how to recognize a low and know how to get help.
2) The 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. These tasks include insulin and glucagon administration, bgm, carb counting, recognition and treatment of highs and lows.
Students should be permitted to provide self-care whenever they are at school or school-related activities. This applies to students who possess the maturity level and skill set to do so.
Students should be permitted to provide self-care whenever they are at school or school-related activities. 11

12. Safe at School Principles Endorsed by:
American Academy of Pediatrics American Association of Clinical Endocrinologists American Association of Diabetes Educators American Diabetes Association Academy of Nutrition and Dietetics Children With Diabetes Disability Rights Education and Defense Fund Juvenile Diabetes Research Foundation Pediatric Endocrine Society Pediatric Endocrinology Nursing Society Endocrine Society
These organizations agree with the SAS campaign goals and principles and help us to foster a safe environment for children with diabetes at school:
American Academy of Pediatrics American Association of Clinical Endocrinologists American Association of Diabetes Educators American Diabetes Association Academy of Nutrition and Dietetics Children With Diabetes Disability Rights Education and Defense Fund Juvenile Diabetes Research Foundation Pediatric Endocrine Society Pediatric Endocrinology Nursing Society
Endocrine Society
Next we are going to talk about some real challenges students with diabetes face and you’ll soon understand why the Association’s Safe at School campaign is so essential to the health and well-being of children with diabetes. 12

13. Who Is Discriminated Against Because of Diabetes?
Unfortunately, many children with diabetes are discriminated against by their schools when they schools don’t provide needed care. These are photos of some actual children the Association has helped to make sure their needs are met at school. The Association receives calls from parents each month who are seeking help in writing their child’s 504 plan and many times calling for help to resolve a school discrimination problem. The Association is here to help!

14. Challenges Facing Students with Diabetes
Failure to have trained staff to assist student with diabetes.
School’s refusal to administer insulin.
School’s refusal to administer glucagon.
No coverage during field trips and extracurricular activities.
Failure to have trained staff to assist students with diabetes. Reality is that most schools do not have a full-time school nurse so there is a need for trained back-up personnel. Trained back-up personnel are also essential in those schools fortunate enough to have a full-time nurse because the nurse usually will not go on field trips or stay for after-school activities. Also, the school nurse may be busy helping another student or may be absent. It is the school’s responsibility to have the school nurse or another trained staff member available at all times to provide needed care. It is the school’s responsibility to train – not the parent’s. Although the parent will need to provide specific information about their child because every child with diabetes is different.
No one to administer insulin or glucagon. We’ve heard of same instances where even the school nurse has refused to administer insulin.
Lack of coverage for field trips and extracurricular activities – the school nurse usually is not available to accompany student during these activities. Even the most experienced and mature student will need help from a trained adult in the event of an emergency. Your child school cannot require you to go on your child’s field trip in order for your child to participate. The same holds true for extracurricular activities. 14 14

15. Challenges Facing Students with Diabetes
School’s refusal to permit blood glucose checks outside of the health clinic or office.
Sending child to “diabetes school.”
School’s refusal to allow a student to attend the school at all.
Classroom bgm – is becoming a more frequently accepted practice. However, there is still an unwarranted fear of blood borne pathogen transmission and fear that lancet will be used to cause injury. Also, some school nurses feel the need to maintain direct control over process.
Some school districts have attempted to send away from their neighborhood schools and to schools where there is a full-time school nurse. Many times, this requires a long bus ride and the concern arises about the lack of trained personnel on the bus to help a student with diabetes. Students with diabetes should not be forced to attend a separate school or be placed in a separate classroom.
We have heard instances where schools have refused to enroll students with diabetes and have recommended to parents that they home school child.
All of these examples of school diabetes management problems constitute discrimination and are in violation of federal laws and many state laws. 15 15

16. Is Your CWD Being Discriminated Against?
Discrimination occurs when students:
Don’t get the care they need, OR
Only get the care they need:
By missing out on school activities, or
Only when a family member can provide assistance at school
Learning is compromised.
Health is compromised.
Legal rights are compromised.
“Discrimination” – which we are going to talk about today – is sadly prevalent in our school districts. Discrimination occurs when students don’t get the care they need or that do get the needed care but it is delivered in such a way that causes the student to miss valuable classroom time, miss out on school activities and sometimes the parent is required to come to school to give a shot or do a fingerstick. When discrimination occurs, learning, health and legal rights are all compromised. 16

17. Federal and State Laws to the Rescue
These laws can help level the playing field and ensure a safe and fair school environment for our children
Federal laws
Americans with Disabilities Act (ADA)
Section 504 of the Rehabilitation Act of 1973 (Section 504)
Individuals with Disabilities in Education Act (IDEA)
State laws, regulations and guidelines
There are federal laws and some states have laws that provide protections to children with diabetes. I am going to provide you with an overview of these laws so that you can understand how they work and how you can use them to ensure your child’s diabetes management needs are met during the school day and at all school-sponsored events including field trips and extracurricular activities. 17

18. ADA and 504 - Civil Rights Laws
Prohibit discrimination on the basis of disability.
Also prohibit retaliation for asserting the right not to be discriminated against.
NOT limited to disabilities that affect learning/ academic progress.
Both the Americans with Disabilities Act or ADA, and Section 504 are federal civil rights laws.
Both prohibit discrimination on the basis of disability.
Both also prohibit retaliation for asserting the right not to be discriminated against.
They NOT limited to disabilities that affect learning/academic progress
Because they are more familiar with the Individuals with Disabilities Education Act (IDEA), some school administrators, nurses or other school personnel may insist that the child with diabetes is not covered under ADA or 504, unless s/he is having academic difficulties. This is not true! Your child’s learning need not be substantially limited in order for your child to be protected by these laws. 18 18

19. Definition of Disability
To be protected by ADA/504 the student must have a disability, defined as:
a physical or mental impairment that substantially limits one or more of major life activities
a record of such an impairment, or
being regarded as having such an impairment.
This includes children with diabetes!
ADA and 504 both share the same definition of disability, which includes the following three elements:
a physical or mental impairment that substantially limits one or more of major life activities (now includes endocrine function)
a record of such an impairment, or
being regarded as having such an impairment.
This includes children with diabetes!! The word “disability” is not a label. Rather it is a legal term to help you to secure needed health services and academic modifications for your child.
In a minute I’ll address how the ADA Amendments Act of 2008 expanded the first part of this definition in a way that makes it easier to show that students with diabetes are eligible for 504 protection and services. But first I want to address what schools are covered by each of these two federal laws because there are some slight differences. 19 19

20. Substantial Limitation of Major Life Activities (ADA & 504)
Walking
Breathing
Learning
Working
Speaking
Endocrine function
Caring for one’s self
Performing manual tasks
Eating
In order for your child to be protected under ADA and/or Section 504 he or she must have a physical or mental impairment that substantially limits a major life activity. Diabetes is a physical impairment that substantially limits the major life activity of endocrine function. This is all that needs to be verified by your child’s health care provider (usually through a letter) in order for a child to qualify for services under these laws. Of course, diabetes substantially limits all of these major life activities.
How are these major life activities impacted when your child is low or high? (Might be a good time for audience participation).
NEED NOT BE LEARNING! 20

21. Americans with Disabilities Act (ADA)
Covered schools: public, private, schools and day care centers –
Not covered: religious institutions
Requirements – Schools must: make reasonable changes in practices and policies to:
avoid discrimination
afford equal opportunity, unless doing so imposes an undue burden.
While ADA and Section 504 share the same definition of disability, they do not cover exactly the same institutions.
COVERED SCHOOLS under ADA:
ADA covers a broader range of schools, including all public and private schools and day care centers,
Religious institutions are not covered, unless they receive federal funds.
SCHOOL REQUIREMENTS under ADA?
Schools are required to make reasonable changes in its practices and policies to avoid discrimination and to afford children with disabilities an equal opportunity to participate unless doing so would impose an “undue burden.” 21 21

22. Section 504
Covered schools: All public schools and private schools (including religious schools) that receive federal financial assistance.
Requirements – Schools must:
Identify children with disabilities.
Provide free and appropriate public education (FAPE).
Compared with ADA, Section 504 covers a narrower range of schools.
COVERED SCHOOLS under Section 504:
All public schools and private schools, including religious schools, that receive federal financial assistance. Charter schools are public schools so charter schools must comply with Section 504 – the same as all public schools.
Under Section 504 schools must:
Identify children with disabilities. Schools do not always do a good job of doing this. Usually it is the parent/guardian who initiates this process by contacting the school’s 504 coordinator who might be the school principal, guidance counselor, a teacher or someone else.
Provide free and appropriate public education (FAPE). Schools cannot charge a fee to provide health services to your child. 22 22

23. Section 504 Requirements – Schools must:
Educate children with disabilities with other students as much as possible.
Allow parental participation in decisions.
Provide equal opportunity to participate in nonacademic and extracurricular activities.
Under Section 504 schools must:
Educate children with disabilities with other students as much as possible. All kids with diabetes or another chronic condition cannot be segregated into a separate classroom or school.
Allow parental participation in decisions. Parents should attend all 504 meetings and work with the 504 team to develop a 504 Plan.
Provide equal opportunity to participate in nonacademic and extracurricular activities.
Cost is not a bar to the school’s obligation to meet the diabetes management needs of your child. 23 23

24. Individuals with Disabilities Education Act (IDEA)
A child with diabetes is covered if he or she needs special education and related services in order to benefit from an education. Diabetes must adversely interfere with academic performance.
School must provide special education program and related services. Children must be educated in the least restrictive environment.
Team that includes parents, special education experts, and school staff develop Individualized Education Program (IEP) which outlines plan to achieve specific educational goals.
Individuals with Disabilities in Education Act (IDEA)
Applies to children with specific disabilities.
A child with diabetes is covered if he or she needs special education and related services in order to benefit from an education.
The diabetes must make it more difficult for the child to learn.
An Individualized Education Program (IEP) sets out what the school is going to do to meet the child’s individual education needs. It is developed by a team that includes parents, special education experts, and school staff.
A sub-section of children with diabetes are covered under IDEA. Those that are covered may have another disability that has demonstrated an adverse impact upon learning or whose fluctuating blood glucose levels impact learning. 24

25. Diabetes and IDEA
May be eligible if another disability – other than diabetes - that limits learning/academic progress
Frequent swings in blood glucose adversely impact learning
Students who qualify under IDEA are also covered by ADA/504, but do not need a separate 504 plan
Children with diabetes may protected under IDEA if:
-He or she has another disability that adversely impacts learning.
-Has frequent swings in blood glucose that adversely impact learning.
Note that students who are protected under IDEA are also covered under ADA and/or Section 504. They do not need a separate 504 Plan. An Individualized Education Program (IEP) is written by the school 504/IEP team for eligible children. 25

26. Religious Schools
Must comply with federal law if federal funds are received.
May develop 504 Plans/IEPs for students.
Sources of federal funds may include free or reduced breakfast and lunch programs, technology assistance or program grants, funding for textbooks and supplies.
Parents can find out whether or not their school receives federal funds by talking to their board of directors, reviewing their school’s budget or annual report, and by going to their school’s website. Many state departments of education websites provide this information also. 26 26

27. Navigating the 504/IEP Process
Parents/guardians should contact school’s 504/IEP coordinator
School may initiate if suspects a need for special education or related services
An evaluation for eligibility under 504 or IDEA will be conducted by school staff knowledgeable about your child
Once an eligibility determination has been made, the 504/IEP team will convene to develop a written plan
Parents should begin the 504/IEP process by contacting the school’s 504/IEP coordinator. This could be the school principal, guidance counselor, a teacher or someone else.
Requests should be confirmed in writing. In fact, it is a good idea to keep a written log of all your communications with the school when navigating through the 504/IEP process.
The school may initiate the process if a need for services or special education is suspected.
Most school districts require an individual assessment to determine if a child is eligible for services under these laws. A team will be convened for evaluation and determination of eligibility.
Once eligibility has been determined, the team will convene to develop a written plan – a Section 504 Plan or Individualized Education Program (IEP). 27

28. Establishing Eligibility
Parent/Guardian Must Do More than Simply State Child has Diabetes
Note from clinician stating that your child has a disability because he is substantially limited in endocrine function
Note can also explain other major life activities that are limited when your child is experiencing hypo- or hyperglycemia
I just told you that diabetes is a disability under federal law because it is a physical impairment substantially limiting the major life activity of endocrine function. With that said, you need to know that Section 504 regulations require individual assessment so you should be prepared to provide a note from your child’s health care provider confirming the diagnosis and stating how diabetes substantially limits the major life activity of endocrine function. Call DIABETES and ask our legal advocates about our template letter to provide to your diabetes educator or physician. 28

29. Review: Comparing the Laws
Section 504:
Public and private school receiving federal funds.
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 education law.
Must demonstrate that diabetes or another disability adversely impacts ability to learn and to progress academically.
Before we go on to discuss the written plans used to document protections and services, lets do a quick comparison of these laws.
Section 504: public and private schools, including religious schools, receiving federal funds; the major life activity substantially limited does not need to be learning.
ADA: same as Section 504, except covers daycares and camps; does not cover religious affiliated schools/programs unless federal funds received.
IDEA: special education law; must demonstrate that diabetes or another disability adversely impacts ability to learn and to progress academically. 29 29

30. State Laws and Regulations
State and local laws and regulations (i.e. Board of Nursing regs) vary regarding who may perform various aspects of diabetes care.
Often there is no statewide policy. Rather, policy is determined district by district.
Some states have developed guidelines.
Regardless of state and local laws, requirements of federal laws must be met.
Some states have passed school diabetes care legislation or changed Board of Nursing regulations.
State Laws and Regulations
While all schools must comply with the federal laws I just spoke about, there are state law considerations.
State have “Nurse Practice Acts” and other laws and regulations that speak to who may or may not provide care to students with diabetes.
To add to the confusion, some policies and practices differ within school districts.
Some states have developed school diabetes management guidelines. Check the Association’s website to see if your state has such guidelines.
Regardless of state law, the requirements of federal law must be met. This means if you live in a state law that only allows a school nurse to provide care then a school nurse must be available at ALL times –not just part-time. And the school nurse must go on field trip and attend ALL extracurricular activities where your child is a participant (not just a spectator).
Some states have passed specific school diabetes care laws or changed relevant Board of Nursing regulations to enable trained school staff member to provide care to our children.
IState and local laws and regulations (i.e. Board of Nursing regs) vary regarding who may perform various aspects of diabetes care.
Often there is no statewide policy. Rather, policy is determined district by district.
Regardless of state and local laws, requirements of federal laws must be met.
Some states have passed school diabetes care legislation. 30

31. School Diabetes Care Laws
Alabama
Arizona
Arkansas
California
Connecticut
District of Columbia
Florida
Georgia
Hawaii
Illinois
Indiana Kansas
Kentucky
Louisiana
Massachusetts Missouri
Montana
Nebraska
New Jersey
North Carolina
Ohio
Oklahoma
Oregon
Rhode Island
South Carolina
Tennessee
Texas
Utah
Virginia
Washington
West Virginia
Wisconsin
This slide shows where specific school diabetes care laws are in place. You can access the text of these laws and regulations on the ADA website. Please note that just because you don’t see your state listed doesn’t mean your state isn’t Safe at School friendly. Some states already have laws in place that allow trained school staff members to provide care and support self-management.
In some states – AK, NV, CO, UT - the board of nursing is taking the lead in standardizing and improving diabetes care in school.
Board of Nursing Action: Nevada, Colorado, Utah, Alaska 31

32. What Does Your State Law Say?
Is delegation of diabetes care tasks by the school nurse permitted, prohibited, or unclear?
Is there a statute that addresses medication administration in the schools?
Is there a Good Samaritan law?
What is your state’s nurse to student ratio?
What state specific resources are available?
It is helpful if parents know what their state’s law permits and prohibits. The best way to find out this information is to call the Association at DIABETES and talk to one of our expert legal advocates who can provide information and guidance and in some cases refer you to a network attorney if your situation needs legal intervention. 32

33. Maryland, New York, Pennsylvania
Please contact Crystal Jackson if you live in one of these states and are willing to share your child’s school diabetes management challenge and willing to get involved with the Association’s advocacy efforts in these states.

34. Other Considerations School Menu Standardized Testing – College Boards
Post-Secondary Rights
In addition to federal and state laws, there are other considerations parents should be aware of that are supported by federal laws. We are going to spend a few moments talking about these now. 34

35. School Menu Refer to USDA Guidance
Schools must make food substitutions or modifications for students with disabilities
Address menu and carb counts in your child’s 504 Plan or IEP
Work with your school nurse and a dietician to calculate carb counts if not already provided
Refer to USDA Guidance for carbohydrate counts and nutritional information. There’s a link from the Association’s website to USDA Guidance.
Schools must make food substitutions or modifications for students with disabilities. This should be documented by your child’s 504 Plan or IEP. This is especially helpful to children with food allergies or celiac disease.
Work with your school nurse and a dietician to calculate carbohydrates if not already provided. 35 35

36. College Boards PSAT, SAT, AP Tests Complete Student Eligibility Form
Must provide documentation which may be your child’s high school 504 plan
Typical accommodations for students with diabetes include frequent breaks, longer breaks, access to food or supplies
and snacks
PSAT, SAT, AP Tests accommodations are available from their respective agencies.
Parents should work with the guidance counselor to complete a Student Eligibility Form or other required application for special accommodations during testing.
While it is a good practice to include testing accommodations in your child’s 504 Plan or IEP, these plans are not required for seeking standardized testing accommodations. Check with your school guidance counselor on specific requirements for accommodation application for the given standardized test.
Typical accommodations for students with diabetes include frequent breaks, longer breaks, access to supplies and snacks. Testing agencies typically will not grant an accommodation for extra time to take a test if it is a timed test. 36 36

37. Post-Secondary Rights
Compliance with Section 504 and ADA
FAPE not required
No identification requirement
Must provide academic adjustments so that it does not discriminate because of student’s diabetes
Documentation required – high school 504 plan is not enough
Institutions must comply with Section 504 and ADA
Unlike primary and secondary schools, post-secondary institutions are not required to provide FAPE (Free and Appropriate Public Education) – no free tuition!
Institutions have no identification requirement – students must self-identify. Students can do this by contacting their institution’s disability office.
Institutions must provide academic adjustments so that it does not discriminate because of student’s diabetes. For example, a student might arrange to take an exam at an alternate time of his or her blood glucose levels are out of target range.
Documentation is required . Have a high school 504 plan is not enough. Usually the school will require a written confirmation of diabetes from your child’s health care provider
A 504 plan can be developed. But more often, the institution’s disability office will provide the student with “letters of accommodation” to provide to instructors as the student chooses to do so. 37 37

38. Written Plans Are Implementation Tools
Diabetes Medical Management Plan (DMMP)
Individual Health Plan (IHP)
Section 504 Plan (504)
Individualized Education Program (IEP)
DMMP or medical orders or doctors orders prepared and signed by the student’s provider and lays out the care regimen for that individual student. It might list the degree of self care the student is capable of, when BG needs to be tested, include types and doses for insulin based on carbs or BG, specify treatments for low BGs, student’s BG range. If the student uses an insulin pump it will include info on that; info on meals, exercise or sports, hi and lo BGs
Used as the basis for the IHP and the 504 or IEP
Your child’s 504 plan or IEP might include accommodations such as:
Student’s level of self care and where supplies will be kept
Snacks and meals are parents responsibility
OK to participate in physical activity and sports and must have trained personnel present
Specify that ?BG and insulin, etc will be done per the DMMP
Issues of field trips and extra chirr activities, testing and cr work, communication, emergency plans
Assuring that there are staff members trained in testing blood glucose levels, recognizing and treating hypoglycemia and hyperglycemia, and administering insulin and glucagon.
Allowing your child to self-administer blood glucose tests in the classroom and in other locations, and allowing your child to promptly treat hypoglycemia and hyperglycemia.
Insuring full participation in all sports, extracurricular activities, and field trips, with the necessary assistance and/or supervision provided.
Eating whenever and wherever necessary, including eating lunch at an appropriate time with enough time to finish eating.
Taking extra trips to the bathroom or water fountain.
Permitting extra absences for medical appointments and sick days when necessary. 38

39. DMMP – Diabetes Medical Management Plan
Document developed and signed by your child’s health care provider.
This can also be a health care plan, diabetes care plan or physician’s orders
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.
Template in NDEP Guide
The DMMP usually includes the physician’s authorization for parents to make adjustments to insulin dosages, carbohydrate intake and other deviations from the plan.
I can’t stress enough how important it is to have your child’s provider update the DMMP when diabetes management changes – such as when your child goes from injections to the pump or as your child achieves more independence. 39

40. What Is a Section 504 Plan?
A written document where the parents and school agree on the services & modifications that the student needs. Each child with diabetes has individual needs. A Section 504 Plan must be individually developed. Template online.
Parents should approach the development of their child’s 504 plan proactively. That is, develop a plan even when things are going well because staff or the situation could change tomorrow. It is safer for your child if all is in writing and everyone understands their role.
A DMMP or health care plan is not a substitute for a Section 504 Plan or IEP.
If your child’s school isn’t complying with the 504 plan, found out their concerns and start to resolve through education. Most concerns arise due to ignorance and lack of knowledge.
Be sure to follow up with your school’s 504 coordinator to make sure all provisions of the plan are being implemented and so that everyone understands their role and responsibilities. 40

41. 504/IEP Plan: Possible Contents
Recognition and prompt treatment of hypoglycemia and hyperglycemia by trained school personnel during school day, field trips, and extracurricular activities.
Immediate access to diabetes supplies and equipment.
Unrestricted access to snacks, water and bathroom.
Classroom blood glucose monitoring.
Here are some suggested provisions for a Section 504 Plan/IEP:
These are some suggested components of a Section 504 Plan/IEP (diabetes related components). Take a look at ADA’s template plan on our website. What is ultimately included depends on the individual child. For example, younger children – such as kindergarteners and early elementary-aged children will always need to have someone around who has been trained to provide all aspects of diabetes care – including insulin and glucagon administration. Another common component is to include language the prohibits the school from penalizing your child if he or she goes over allowed absences or tardies such as extra time away from school for doctor’s appointments. 41

42. 504/IEP Plan: Possible Contents
Adherence to care schedule (routine blood glucose testing, insulin administration, meals and snacks eaten on time).
Reasonable time/instruction to make up assignments and tests missed due to diabetes.
No penalties for absences due to diabetes (illness/doctor’s appointments).
Identify trained school personnel.
Here’s a continuing list of possible provisions to include in your child’s 504 plan or IEP. 42

43. School Plans for Diabetes Management
What it covers
Who writes it
DMMP
“Doctor’s Orders” – details all aspects of routine and emergency diabetes care.
Health care team.
504 Plan
IEP Team
Education plans - details both health care and educated related aids, services, accommodations, and special education services the student may need.
504 team
IEP team
IHP
School nursing care plan - specifies how diabetes care as prescribed in the DMMP will be delivered in the school
School nurse
Quick Reference
Resource/Tool for school staff - how to recognize and treat hypo or hyperglycemia
For a quick review, this slide details five plans that schools commonly use to document and support delivery of care as it is prescribed by the student’s health care team.
The first is the Diabetes Medical Management Plan or DMMP.
A simplified way to think of the DMMP is to think of it as “Doctor’s Orders.” It specifies the
The DMMP specifies WHAT needs to be done to manage a particular student’s diabetes.
The DMMP is written by the health care team with input from the student and parent/guardian. It is signed by a health care provider.
A “504 Plan” is a broader accommodations plan developed under Section 504 of the Rehabilitation Act.
A 504 accommodations plan documents “reasonable accommodations needed to support academic progress and ensure equal opportunity
It is written by the 504 team, which includes the student, family, school nurse, teachers, and administrators.
An Individualized Education Program (or IEP) is required for students who receive special education and related services under the Individuals with Disabilities Education Act (IDEA).
An IEP includes a section on health, but it is a comprehensive document that addresses all areas of a students’ education and related services needs.
It is written by an IEP team, including general and special educators, related service professionals, administrator, parents, and student
Either a Section 504 plan or an IEP may include implementation details from the DMMP that either duplicates or replaces a separate IHP plan. Whatever plan is used, it is vitally important that the school health team takes the time to fully document the specifics of how the DMMP will be carried out in the school setting.
The IHP documents how the medical management as specified in the DMMP will be implemented across all school sponsored activities.
It translates the DMMP into an plan that works in the context of a particular school building or program. That is, it identifies the By WHOM, WHEN, WHERE, and HOW that diabetes care tasks prescribed by the health care team will be carried out.
The IHP is written by the school nurse but is developed with input from the school health team, including the student, family, school nurse, and other school staff.
The quick reference plan is more focused.
Essentially, it is a resource or tool to provide easy to access information to support school professionals in identifying and responding appropriately to high and low blood glucose levels.
The quick reference plan is written by the school nurse based on information from DMMP , student and parents. 43 43

44. Back-To-School Strategies
Approach in spirit of cooperation and work with the school team.
Be realistic and reasonable!
Communication is paramount.
Provide supplies, snacks, quick-acting form of glucose.
Encourage your child to wear a medical ID jewelry.
Parents of children with diabetes have some extra back to school shopping and preparation to do:
Approach in the spirit of cooperation. Your child will be in school for a long time and is dependent upon the school nurse and staff for help and support. Work toward a shared goal of keeping your child safe, healthy and best positioned for success.
Be realistic! We all are only human. Be reasonable. All perspectives must be respected and considered. Listen to the school’s concerns and be ready to brainstorm to come up with practical solutions.
Communicate early and often with school personnel who will be in direct contact with your child including bus drivers, coaches and other special interest teachers/advisors.
Be your child’s advocate, but maintain an open mind and willingness to listen to others concerns.
Provide a complete kit of current, clearly labeled supplies, snacks and quick acting forms of glucose.
Encourage your child to wear medical ID jewelry.
The school nurse is the coordinator of care at school, but often parents are aware of a problem or challenge before the nurse has any knowledge of it Keep the lines of communication open and provide the information that the nurse needs to make accommodations in the care plan at school. Build trust that you will bring concerns to the attention of the nurse, but that you are also willing to be a part of the solution. 44

45. Working through disagreement: ADA Legal Advocacy Strategies
EDUCATION. Negotiation. Litigation. Legislation.
Educate school personnel about diabetes and legal obligations.
Negotiate using resources such as NDEP school guide, ADA resources, and medical device trainers.
Litigate if necessary – OCR, due process, state court, federal court.
Legislate if all else fails and clear legal barriers exist.
We accomplish our goal for a Safe School environment for every child with diabetes through our legal advocacy strategies of education, negotiation, litigation, legislation.
Parents need to be prepared to educate school personnel about diabetes and legal obligations.
Negotiate when needed using resources such as NDEP school guide, ADA resources, your child’s health care provider, and pump companies.
Litigate if necessary – Office for Civil Rights, due process, state court, federal court. Contact the Association if you feel you need to litigate. Most problems can be resolved through education and negotiation.
Legislate if all else fails and clear legal barriers exist. Contact the Association if you feel that change is needed at the state legislative or policy level. 45 45

46. Education Resources
American Diabetes Association Position Statement: Care of Children with Diabetes in the School and Day Care Setting
ADA School Discrimination Packet
Training modules for school personnel
1-800-DIABETES
Let’s focus on “educate.” Usually education of school personnel about diabetes and about the school’s legal obligations is all that is needed to overcome a school diabetes care challenge.
The Association has many helpful resources to “educate” available from our website at and by calling DIABETES. 46

47. Education & Training Resources:
NDEP School Guide
Crystal:
Both the NDEP Guide and the ADA position statement are great resources for families, health care providers and schools.
The ADA Diabetes Care tasks at school is meant for school nurses or other health care providers with diabetes expertise to use in training non-medical school staff in diabetes care tasks. Linda will cover this, the NDEP guide, and the HANDS curriculum training for school nurses, in the last part of the webinar.
Diabetes Care Tasks at School
ADA Position Statement
Helping Administer to the Needs of the Student with Diabetes in School 47

48. Post-Secondary Education
The Association also has this comprehensive resource for post-secondary students that explains the right of post-secondary students. It covers Section 504 and the Americans with Disabilities Act and explains how to navigate the 504 process at the college level. This resource is available for downloading at the link provided in the slide.
diabetes.org/assets/pdfs/schools/going-to-college-with-diabetes.pdf 48

49. Negotiate: Strategies
Make requests and note objections IN WRITING – works!
Obtain expert opinion letter from your child’s health care provider.
Gather resources to support your position.
Remember: Push for your ideal situation, but focus on the absolute necessities and consider compromising on the non-necessities.
Make your concerns and requests in writing to all relevant school decision makers, like the principal, nurse, and 504 coordinator, so that the whole team is on notice of what your child needs and why. If possible, obtain written clarification, along with copies of school policies and applicable laws, that form a basis for school’s concerns or objections.
Obtain expert opinion letter from your child’s health care provider.
Focus on the biggest concerns first, tackle smaller issues once the most important issues are addressed. Health care team and advocates may be able to attend meetings or speak with school decision makers.
Know your bottom line and stick to it:
You can note your objections to a plan by circling the problems and writing what needs to be changed into the written plan—don’t forget to make a copy! You can sign the remainder of the written plan so that the parts you and the school agree upon go into effect.
Be persistent. Sometimes parents have to raise a concern with the school several times, several ways, before change occurs.

50. Litigate: When and How? When education and negotiation fail…
Preliminary step: School district due process or grievance proceedings
File complaint with:
U.S. Department of Education, Office of Civil Rights;
Department of Justice;
or state Department of Education
File lawsuit in state or federal court
Litigate
Fortunately, most problems in securing appropriate diabetes care will be resolved through education and negotiation.
If after education and negotiation, the child’s needs are still not being met, the parent may want to consider filing an administrative complaint or lawsuit in court. Procedures will vary depending on whether it’s a claim filed under 504, ADA, or IDEA. Call DIABETES and fill out the Request for Discrimination Information and Assistance form and an ADA Legal Advocate will discuss your options with you. 50

51. Legislate: When? Legislate, if educate, negotiate, and litigate
are not successful.
Consider changing state law or policies if current laws and policies do not provide students with diabetes the protection they need
Contact the Association first
Legislate after attempts to educate, negotiate, and litigate have failed and current policies and state laws do not provide needed protection to students with diabetes.
Alert ADA if you find legal barriers (i.e. nurses refusal to delegate due to state law) to appropriate diabetes care in your school district.
ADA maintains a database of discrimination it receives that helps to identify areas of the country where there are many problems.
Work with ADA to assess need for legislation.
Take part in advocating for changing the state law.
Realize that systems change slowly and the success of legislative efforts requires patience and perseverance.
Many states have laws that limit what non-medically licensed personnel may do to help a student with diabetes. It may be part of the state’s Nurse Practice Act.
Sometimes there is no statewide policy. Rather, policy is determined district by district.
Some states give regulatory authority to the state Board of Nursing.
Some states have school diabetes care specific laws.
A caution worth repeating to parents who are frustrated:
Most disagreements with schools can be resolved through educating and negotiating with school staff. If you get to the point that you feel litigation or legislation is the only solution, please request assistance from an American Diabetes Association Legal advocate before taking action to file a court case or draft legislation. 51

52. Recent Safe at School Developments
Legislation or regulatory change achieved in 35 states (as of June 2014).
California Supreme Court decision (August 2013) held that trained school staff members are permitted to administer insulin to students.
Office for Civil Rights recently issued a letter of findng making it clear that SWD must have equal access to extracurricular athletics.
Office for Civil Rights recently issued a letter of finding making it clear that charter schools are public schools and have the same federal anti-discrimination law obligations.
Launch of new child care initiative in 2013 to better meet the needs of very young children in the child care – diabetes.org/childcare.
We have achieved success in the state legislatures or working with the state Boards of Nursing in 34 states (see earlier slide).
The Association celebrated a victory for our California students in August 2013 making it clear that trained school staff members can administer insulin to these students.
The Office for Civil Rights issued guidance in January 2013 making it clear that students must receive accommodations during extracurricular activities.
We are excited about our new child care initiative launched this year. Our new brochure and template medical management plan are now available at diabetes.org/childcare. Guidelines and position statement focused upon younger children with diabetes are coming soon. 52

53. Next Steps……
Read the information on about legal rights and written plans.
Call us at DIABETES if you need help or have questions.
Work with your child’s health care provider to develop or update your child’s DMMP.
Schedule a meeting with the school nurse and/or principal to review DMMP.
Help identify training resources.
Initiate the 504/IEP process or update your child’s plan by contacting school’s 504/IEP coordinator (principal, guidance counselor, teacher)
So what do you do now?
Read the information on about legal rights and written plans.
Call us at DIABETES if you need help or have questions.
Work with your child’s health care provider to develop or update your child’s DMMP.
Schedule a meeting with the school nurse and/or principal to review DMMP.
Help identify training resources.
Initiate the 504/IEP process or update your child’s plan by contacting school’s 504/IEP coordinator. 53

54. Become a Diabetes Advocate
Sign up at the ADA Action Center
Receive updates on advocacy issues in:
the U.S. Congress
your state legislature
ADA’s Safe at School campaign
To stay informed about the Association’s advocacy efforts, be sure to register as an advocate. You’ll receive updates on a variety of issues at the federal and state levels and, of course, you’ll receive updates about the Association’s Safe at School campaign. 54

55. Get Involved Locally
Call DIABETES to connect with your local American Diabetes Association office Step Out and help raise support for Safe at School efforts and other mission activities:
Family Link
Camp
Diabetes Expo
If you are interested in becoming involved with the Safe at School campaign, contact your local American Diabetes Association office at DIABETES to find out about opportunities in your community. 55

56. CAUTION: Keep in mind – especially if you are really frustrated:
We’re here to help you!
CAUTION: Keep in mind – especially if you are really frustrated:
Most disagreements with schools can be resolved as you educate and negotiate with school staff.
If you get to the point that you feel litigation or legislation is the only solution, please request assistance from an American Diabetes Association Legal advocate before taking legal action: DIABETES
A caution worth repeating to parents who are frustrated:
Most disagreements with schools can be resolved through educating and negotiating with school staff. If you get to the point that you feel litigation or legislation is the only solution, please request assistance from an American Diabetes Association Legal advocate before taking action to file case with the Office for Civil Rights, or Department of Justice, or pursuing new state legislation.
We are here to help!
1-800-DIABETES 56