Keeping Kids with Diabetes Safe at School Keeping Kids with Diabetes Safe at School Crystal Jackson, Associate Director, Legal Advocacy American Diabetes.
Presentation on theme: "Keeping Kids with Diabetes Safe at School Crystal Jackson,"— Presentation transcript:
1 Keeping Kids with Diabetes Safe at School Crystal Jackson, Associate Director, Legal AdvocacyAmerican Diabetes AssociationFriends for Life 2011Orlando, Florida
2 We deliver mission through: ADA MissionTo prevent and cure diabetes and improve the lives of all people affected by diabetes.We deliver mission through:ResearchInformation & SupportAdvocacy & Public AwarenessTrainer Notes …(The talking points below are a guide – tailor them to meet your needs/situation.)Introduce self… Share your personal experience as an ADA volunteer, donor, special event participant, and parent or health care providerMy 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 speakslouder 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 XBut, 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 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.Because as welcome as that CURE will be when it comes, I want <insert name> to be able to greet it with as much health and vitality as possible.The life-limiting complications of diabetes loom large in my heart and mind as a Mom. So do the burdens of 24/7 vigilance about blood glucose management. So, yes, I am very grateful for all that ADA does to “improve lives.”ADA delivers mission through three primary areas. Research, Information & support, and Advocacy and Public awareness.In a few minutes Ill want to give you a brief introduction to some of ADAs activities in those areas that are relevant to kids with diabetes and their families.But before we get to that, let’s spend a few minutes now getting to know one another and our goals for this workshop.INTRODUCTIONS:Ask participants to share their name, age of their child, school district and grade in school. Ask them to share one thing they want to learn in this workshop.2
3 ADA Youth Initiatives Safe at School Campaign National Youth Advocate (www.diabetes.org/nationalyouthadvocate)CampFamily LinkEveryday Wisdom kit for newly dxSchool Walk for Diabetes (SWFD)
4 Session Key Points Safe at School Campaign School diabetes care challengesFederal and state lawsDevelopment of 504 and strategies to overcome challengesResourcesTrainer Notes:Today we will cover the following topics …Realities of diabetes at schoolSafe at School Campaign Goals and principlesUnderstanding of child and parent’s rights under federal laws and role of state laws and regulationsDevelopment of 504 and health care plansStrategies to overcome challengesResources<TRANSITION SLIDE>4
5 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.Support for transition to independence.
6 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.Trainer Notes: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.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.Students should be permitted to provide self-care whenever they are at school or school-related activities.<TRANSITION SLIDE>Students should be permitted to provide self-care whenever they are at school or school-related activities.6
7 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 Endocrine SocietyTrainer Notes: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 American Dietetic Association Children With Diabetes Disability Rights Education and Defense Fund Juvenile Diabetes Research Foundation Lawson Wilkins Pediatric Endocrine Society Pediatric Endocrinology Nursing Society7
8 Who Is Discriminated Against Because of Diabetes? Celeste BarslouConnorDevin JacksonWilson
9 Challenges Facing Students with Diabetes Failure to have trained staff to assist students with diabetes.School’s refusal to administer insulin.School’s refusal to administer glucagon.No coverage during field trips and extracurricular activities.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.Trainer Notes: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.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 extracurriculars – 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.Classroom bgm – is becoming a more frequently accepted practice. However, there is still an unwarranted fear of bloodborne 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.We have heard instances where schools have refused to enroll students with diabetes and have recommended to parents that they homeschool child.9
10 Laws to Help Achieve School Diabetes Care Goals Americans with Disabilities ActSection 504 of the Rehabilitation Act of 1973Individuals with Disabilities in Education ActState lawsSection 504
11 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.Trainer Notes:Both the Americans with disabilities Act or ADA, and Section 504 are 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 progressBecause they are more familiar with the Individuals with Disabilities Education Act or 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!11
12 Americans with Disabilities Act (ADA) Covered schools: public, private, schools and day care centers –Not covered: religious institutions (unless they receive federal funds)Requirements – Schools must: make reasonable changes in practices and policies to:avoid discriminationafford equal opportunity, unless doing so imposes an undue burden.Trainer Notes:While ADA and 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.”12
13 Section 504Covered schools: All public schools and private schools that receive federal financial assistance.Requirements – Schools must:Identify children with disabilities.Provide free and appropriate public education (FAPE).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.Trainer Notes:Compared with ADA, 504 covers a narrower range of schools.COVERED SCHOOLS under 504:All public schools and private schools that receive federal financial assistance.SCHOOL REQUIREMENTS under 504:Identify children with disabilities.Provide free and appropriate public education (FAPE).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.13
14 Substantial Limitation of Major Life Activities ( ADA & 504) Endocrine functionCaring for one’s selfPerforming manual tasksEatingWalkingBreathingLearningWorkingSpeakingNEED NOT BE LEARNING!
15 Schools Must: Identify children with disabilities. Provide free and appropriate public education (FAPE).Educate children with disabilities with other students as much as possible.Allow parental participation in decisions.Provide children with disabilities with an equal opportunity to participate in nonacademic and extracurricular activities.Schools must:Identify children with disabilities. Many schools will send out a questionnaire to parents at the beginning of the school year to identify students with disabilities. Reality is that most of the time parents must require an evaluation.Schools must provide free and appropriate public education. Schools must provide FAPE to students with disabilities regardless of the nature or severity of disability. District must fund adequate services to provide FAPE to students with disabilities.Educate students with disabilities with other students as much as possible.Allow parental participation in decisions – development and changes to 504 plan.Students with disabilities must have access to all school-related opportunities. For a student with diabetes, this means that a trained school staff member must be available to provide care – during school day, during extracurricular activities, field trips, etc.
16 Establishment of Eligibility Must do more than simply state child has diabetesNote from clinician stating that your child has a disability because he is substantially limited in endocrine functionNote can also explain other major life activities that are limited when your child is experiencing hypo- or hyper-glycemia
17 Evaluation RequiredSchools must conduct an evaluation if suspected in need of special education or related services or if requested by parent.
18 Section 504 Requires Evaluation Meeting Evaluation must be made by a group ofpersons who are:Knowledgeable about your childKnowledgeable about the evaluation dataKnowledgeable about services optionsUpon determination of 504 eligibility, a Section 504 Plan is developed by school team
19 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 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.Includes information about child’s present level of performance and a plan to achieve specific educational goals, including the special education and related services the child will receive.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.
20 Coverage Under IDEA?Another disability – other than diabetes - that limits learning/academic progressFrequent swings in blood glucose adversely impact learning
21 Review: Comparing the Laws Section 504: public and private school receiving federal funds; 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.Trainer Notes: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 school receiving federal funds; 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.21
22 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.Regardless of state and local laws, requirements of federal laws must be met.Some states have passed school diabetes care legislation.Consider BON action (NV, CO, UT)State Laws and RegulationsState 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.
23 Board of Nursing Action: Nevada, Colorado, Utah School Diabetes Care LawsMassachusettsMontanaNebraskaNew JerseyNorth CarolinaOklahomaOregonRhode IslandArizonaCaliforniaConnecticutFloridaHawaiiIllinoisIndianaKentuckySouth CarolinaTennesseeTexasUtahVirginiaWashingtonWest VirginiaWisconsinTrainer Notes:This slide shows where school diabetes care laws are in place. You can access the text of these laws and regulations on the ADA website.In some states the board of nursing is taking the lead in standardizing and improving diabetes care in school.Board of Nursing Action: Nevada, Colorado, Utah
25 School Menu Refer to USDA Guidance Schools must make food substitutions or modifications for students with disabilitiesAddress menu and carb counts in your child 504 Plan or IEPWork with your school nurse and a dietician to calculate carb counts if not already providedTrainer Notes:Refer to USDA GuidanceSchools must make food substitutions or modifications for students with disabilitiesAddress menu and carb counts in your child 504 Plan or IEPWork with your school nurse and a dietician to calculate carb counts if not already provided25
26 College Boards PSAT, SAT, AP Tests Complete Student Eligibility Form Must provide documentation which should include 504 planTypical accommodations for students with diabetes include frequent breaks, longer breaks, access to supplies and snacksTrainer Notes:PSAT, SAT, AP TestsComplete Student Eligibility FormMust provide documentation which should include 504 planTypical accommodations for students with diabetes include frequent breaks, longer breaks, access to supplies and snacks26
27 Post-Secondary Rights Compliance with Section 504 and ADAFAPE not requiredNo identification requirementMust provide academic adjustments so that it does not discriminate because of student’s diabetesDocumentation required – high school 504 plan is not enoughTrainer Notes:Compliance with Section 504 and ADA(Free and Appropriate Public Education) FAPE not required – no free tuition!No identification requirementMust provide academic adjustments so that it does not discriminate because of student’s diabetesDocumentation required – high school 504 plan is not enough27
28 Written Plans Diabetes Medical Management Plan (DMMP) Individual Health Plan (IHP)Section 504 Plan (504)Individualized Education Program (IEP)DMMPIHP504IEPDMMP 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 car 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 onmeals, exercise or sports, hi and lo BGsUsed as the basis for the IHP and the 504 or IEPYour written plan might include accommodations such as:504/IEPTraining of staff members and how manyStudent’s level of self care and where supplies will be keptSnacks and meals, parents resp to provide, change process,OK to participate in phys activity and sports and have trained personnel presentSpecify tht ?BG and insulin, etc will be done per the DMMPIssues of field trips and extra cuirr activities, testing and cr work, communication, emergency plansAssuring 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.
29 Diabetes Medical Management Plan DMMPDiabetes Medical Management PlanDocument developed and signed by your child’s health care provider.This can also be a health care plan, diabetes care plan or physician’s ordersSets 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.
30 Individualized Health Care Plan IHPIndividualized Health Care PlanDeveloped by the school nurse in collaboration with hcp and parent/guardianBased on the DMMPIncorporates an assessment of the school environment and the studentUsed to outline the diabetes management strategies and personnel needed
31 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.
32 504/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.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.Section 504 Plan/IEP (diabetes related components)Covered schools are required to provide reasonable accommodation in order to allow students with disabilities to receive an education that is comparable to that provided to students without disabilities. Accommodations should be documents in a 504 plan, IEP, or other written accommodation plan – in addition to the DMMP.Each child with diabetes will have his or her own needs and plan should be individually developed.
33 School Plans for Diabetes Management What it coversWho writes itDMMP“Doctor’s Orders” – details all aspects of routine and emergency diabetes care.Health care team.504 PlanIEP TeamEducation plans - details both health care and educated related aids, services, accommodations, and special education services the student may need.504 teamIEP teamIHPSchool nursing care plan - specifies how diabetes care as prescribed in the DMMP will be delivered in the schoolSchool nurseQuick ReferenceResource/Tool for school staff - how to recognize and treat hypo or hyperglycemiaFor 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 theThe 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 opportunityIt 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 studentEither 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.33
34 Back-To-School Strategies Approach in spirit of cooperation and work with the school team.Provide supplies, snacks, quick-acting form of glucose.Encourage your child to wear a medical ID jewelry.Trainer Notes:Parents of children with diabetes have some extra Back to School shopping and preparation to do.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.34
35 ADA Legal Advocacy Strategies Meeting challenges 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.Trainer Notes:We accomplish our goal for a Safe School environment for every child with diabetes through our legal advocacy strategies of 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.35
36 Education ResourcesAmerican Diabetes Association Position Statement: Care of Children with Diabetes in the School and Day Care SettingADA School Discrimination PacketTraining set for school personnel1-800-DIABETESLet’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.
37 Educate and Negotiate Resources Diabetes Care Tasks at School: What School Personnel Need to Know:ADA training modules and video to beused by health care professionals to trainschool personnel n diabetes care tasks.Trainer Notes:This is a great resource that ADA has developed especially to be used by health care professionals to train school personnel in diabetes care tasks. Specific modules can be shown at teacher staff meetings to enhance diabetes awareness and knowledge.Diabetes Care Tasks at School: What School Personnel Need to Know13 modular PowerPoint training units on diabetes and diabetes care tasks are available at:The PowerPoint modules are available for free download. Both the PowerPoint CD and a DVD of corresponding video segments are available for order from the ADA bookstore.List of Modules (for reference)* Diabetes Basics* Diabetes Medical Management Plan* Hypoglycemia* Hyperglycemia* Blood Glucose Monitoring* Glucagon Administration* Insulin Basics* Insulin by Syringe and Vial)* Insulin by Pen* Insulin by Pump* Ketones* Nutrition and Physical Activity* Legal Considerations
38 Helping Administer to the Needs of the Student with Diabetes in School A Program for School Nurses presented by the National Association of School NursesGoal: To provide the school nurse with the knowledge, skills & resources to facilitate safe and effective diabetes management at school
39 An Updated Edition of NDEP’s Comprehensive School Guide produced by the NDEP, a federally sponsored partnership of the NIDDK of the NIH and the DDT of the CDC, and more than 200 partner organizations.One example of an excellent resource is the National Diabetes Education Program’s guide called “Helping the Student with Diabetes Succeed: A Guide for School Personnel.” You can order a copy of this guide by going to ADA’s or NDEP’s website. Be sure to share it with your child’s school nurse and other school staff members who have responsibility for caring for your child.
40 Negotiation 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 compromise. Push for your ideal situation, but focus on the absolute necessities and consider compromising on the non-necessities.Trainer Notes: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 decisionmakers.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.
41 Litigate When education and negotiation fail… Preliminary step: School district due process or grievance proceedingsFile complaint with U.S. Department of Education, Office of Civil Rights; Department of Justice; or state department of educationFile lawsuit in state or federal courtTrainer Notes:LitigateFortunately, 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.
42 Legislate 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 needSchool diabetes care laws, regulations, or policies enacted in 27 states.Trainer Notes: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.
43 Updates Achieved legislative and regulatory change in 24 states Fought for favorable outcomes in settlement agreementsGranted review by California Supreme CourtDepartment of Justice filed an amicus brief in CA litigationProvided assistance to thousands of families
44 Ways You Can HelpRegister to become an ADA Diabetes AdvocateDonate to ADAParticipate in special eventsVolunteerTell your friends about ADA1-888-DIABETES ( )
45 Become a Diabetes Advocate Sign up at the ADA Action Center Receive updates on advocacy issues in the U.S. Congress, your state legislature, and the ADA’s Safe at School campaign