TAKING EPILEPSY TO TAKING EPILEPSY TO SCHOOLSCHOOL

Laura Neece-Baltaro, MBALaura Neece-Baltaro, MBA

SECTION I: GETTING SECTION I: GETTING STARTEDSTARTEDEPILEPSY AT SCHOOLEPILEPSY AT SCHOOL

To tell, or Not to tell?To tell, or Not to tell?

• Pros Pros - Proper first aid Proper first aid

- Medication reactions Medication reactions

- IEP, 504 plan and/or IEP, 504 plan and/or IHP can be IHP can be implementedimplemented

- Partner with Partner with staff/classmates to staff/classmates to help your child live help your child live better with epilepsybetter with epilepsy

• ConsCons- StigmaStigma

- Lowered Lowered expectationsexpectations

- Being treated Being treated differentlydifferently• By teachersBy teachers• By peersBy peers

Who to tellWho to tell• Consider:Consider:- Seizures: How often & when? Seizures: How often & when? - Seizures likely to occur at school? Seizures likely to occur at school? - Severity of seizures? Severity of seizures?

• School staffSchool staff- School nurseSchool nurse

- Teachers,Teachers,- AdministratorsAdministrators- Other staff: Lunch room, bus drivers, Other staff: Lunch room, bus drivers,

librarians, etc.librarians, etc.• Students/PeersStudents/Peers

How to discloseHow to disclose

• Health formsHealth forms- Your school Your school

district’s formsdistrict’s forms- Epilepsy Foundation Epilepsy Foundation

online formsonline forms• IHP = Individualized IHP = Individualized

Health PlanHealth Plan• IEP = Individualized IEP = Individualized

Educational Educational ProgramProgram

• Educational Educational presentationspresentations

Epilepsy Foundation FormsEpilepsy Foundation Forms

- Seizure Action PlanSeizure Action Plan

- Tips for Seizure Observation and Tips for Seizure Observation and RecordingRecording

- Seizure Observation Form Seizure Observation Form

- Patient Information Sheet – Medication Patient Information Sheet – Medication ListList

http://www.epilepsy.com/get-help/toolboxhttp://www.epilepsy.com/get-help/toolbox

Seizure Action Plan formSeizure Action Plan form

Tips for Seizure Observation Tips for Seizure Observation formform

Seizure Observation Record Seizure Observation Record FormsForms

Preparing for Seizure Preparing for Seizure Emergencies at SchoolEmergencies at School

• Seizure first aid trainingSeizure first aid training- Staff; ClassmatesStaff; Classmates

• Seizure first aid postersSeizure first aid posters

• If emergency medications or the VNS are used:If emergency medications or the VNS are used:

- Find out your district’s and school’s Find out your district’s and school’s regulationsregulations

- Develop Seizure Emergency Plan (with Develop Seizure Emergency Plan (with child’s neurologist)child’s neurologist)

- Work with School Nurse to implement an IHPWork with School Nurse to implement an IHP• Keep your emergency contact information up to Keep your emergency contact information up to

date!date!

What does your child need?What does your child need?

• An IHP? An IHP? (Individualized (Individualized Healthcare Plan)Healthcare Plan)

• An IEP? An IEP? (Individualized (Individualized Education Education Program)Program)

• Both? Both? • And what is a 504 And what is a 504

Plan?Plan?

IHP and IEPIHP and IEP

• Separate documentsSeparate documents

• A child may need one and not the other; A child may need one and not the other; - Most children who need an IHP Most children who need an IHP

should also have an IEP.should also have an IEP.• IEP should reference IHP—if there is IEP should reference IHP—if there is

IHPIHP• IHP should be available to IEP team IHP should be available to IEP team - to address medical issues that may to address medical issues that may

affect academic successaffect academic success

SECTION II: THE IHPSECTION II: THE IHPIndividualized Healthcare PlanIndividualized Healthcare Plan

What is the IHP? What is the IHP?

A nursing care A nursing care plan specific to plan specific to one student in one student in his/her school his/her school setting. setting.

Goals of the IHPGoals of the IHP• Communicate that specific student’s health needs.Communicate that specific student’s health needs.

• Inclusion (plan for field trips, extracurricular activities)Inclusion (plan for field trips, extracurricular activities)

• Detail emergency interventions (& expected outcomes)Detail emergency interventions (& expected outcomes)

- Who Who

- WhatWhat

- When When

• Specify supports to optimize attendance & learningSpecify supports to optimize attendance & learning

• Provide for safety of Provide for safety of

- the student,the student,

- classmates, classmates, - school staff.school staff.

Who needs an IHP?Who needs an IHP?

Students need an IHP if they:Students need an IHP if they:

•Require medical attention/services Require medical attention/services during the school dayduring the school day•May require emergency or crisis May require emergency or crisis intervention during school or school intervention during school or school activities. activities. •Have a medical condition(s) impacting Have a medical condition(s) impacting schoolschool- Performance, or Performance, or - attendanceattendance

Examples of when IHP is Examples of when IHP is neededneeded

Student requires:Student requires:

•Invasive procedures of any type:Invasive procedures of any type:

- Gastrostomy tube feedingsGastrostomy tube feedings- Tracheostomy careTracheostomy care- Urinary catheterizationUrinary catheterization

- Medication by route other than oral, Medication by route other than oral, topical, inhalation, and instillation (rectal topical, inhalation, and instillation (rectal valium gel)valium gel)

•As-needed procedures, (rectal valium gel, VNS As-needed procedures, (rectal valium gel, VNS magnet)magnet)

•Ketogenic DietKetogenic Diet

Rescue Medications:Rescue Medications:Rectal diazepam gelRectal diazepam gel Bucal lorazepam Bucal lorazepam

(Ativan)(Ativan)

18

Midazolam Nasal Spray

VNS: Vagus Nerve Stimulator VNS: Vagus Nerve Stimulator MagnetMagnet

19

Developing the IHPDeveloping the IHP

• IHP’s author is determined by state lawsIHP’s author is determined by state laws

- A registered nurse – usually the school A registered nurse – usually the school nursenurse

- What if there is no school nurse?What if there is no school nurse?• DELEGATION – requires a registered DELEGATION – requires a registered

nurse and that registered nurse is nurse and that registered nurse is responsible for the outcomes. responsible for the outcomes.

• Legal authorization by the prescribing medical Legal authorization by the prescribing medical professional for procedures included in IHPprofessional for procedures included in IHP

• Physician review is not always required, Physician review is not always required, although it may be a good idea in your child’s although it may be a good idea in your child’s specific case. specific case.

Elements of the IHP Elements of the IHP • Diagnosis / ConditionDiagnosis / Condition

• Current assessmentCurrent assessment

- Age / developmental ageAge / developmental age- Cognitive abilityCognitive ability- Communication abilityCommunication ability

- MobilityMobility

• Evacuation needs (fire drills, etc.)Evacuation needs (fire drills, etc.)• Routine & predictable needs (who does what, Routine & predictable needs (who does what,

when and what outcomes are expected)when and what outcomes are expected)

• Emergency care/interventions (continued Emergency care/interventions (continued NEXT SLIDE)NEXT SLIDE)

Elements of the IHP (continued)Elements of the IHP (continued)Emergency Care PlanEmergency Care Plan

• Recognizing when emergency care is neededRecognizing when emergency care is needed- Signs & symptomsSigns & symptoms

• What is the expected response: What is the expected response:

- Who Who

- What,What,- WhereWhere

• What if’s…What if’s…• What to do next ….What to do next ….

• Skills and procedures necessary for the Skills and procedures necessary for the intervention. intervention.

- Any training that might be requiredAny training that might be required

When to reevaluate the IHP When to reevaluate the IHP

• At least annually – preferably closer to At least annually – preferably closer to beginning of school yearbeginning of school year

• Change in student’s medical status Change in student’s medical status - Medication or treatment plan Medication or treatment plan - Diagnosis has changedDiagnosis has changed

• Staffing/teacher changeStaffing/teacher change

The IHP – Who can help youThe IHP – Who can help you

Family Voices Affiliates: Family Voices Affiliates: www.familyvoices.orgwww.familyvoices.org Family Family Voices of OhioVoices of Ohio 6555 Busch Blvd Suite 112 · 6555 Busch Blvd Suite 112 · Columbus, OH 43229Columbus, OH 43229Phone: (419) 251-8190 · Fax: · Toll-Free: (877) 322-2200Phone: (419) 251-8190 · Fax: · Toll-Free: (877) 322-2200

Epilepsy Foundation & Affiliates: Epilepsy Foundation & Affiliates: http://http://www.epilepsy.com/get-helpwww.epilepsy.com/get-help •Toll-Free Helpline: 1-800-332-1000Toll-Free Helpline: 1-800-332-1000(en Español 1-866-748-8008)(en Español 1-866-748-8008)•Calls are answered 24 hours a day, 7 days a week.Calls are answered 24 hours a day, 7 days a week.

SECTION III: THE IEPSECTION III: THE IEPIndividualized Education ProgramIndividualized Education Program

The Individualized Education The Individualized Education ProgramProgram

• Part of the Individuals with Disabilities Part of the Individuals with Disabilities Education Act (IDEA)Education Act (IDEA)

• Written statementWritten statement• For an individual childFor an individual child- To address his/her specific needsTo address his/her specific needs- To secure a Free To secure a Free AppropriateAppropriate Public Public

Education (FAPE)Education (FAPE)

Qualifying for an IEPQualifying for an IEP• Eligibility: 2-part requirementEligibility: 2-part requirement

- Child has a disabilityChild has a disability

- Because of that disability the child Because of that disability the child requires special education and related requires special education and related services, services, according to the standards according to the standards and/or requirements of your school and/or requirements of your school districtdistrict..

• Alternative if they do not qualify: Section 504 Alternative if they do not qualify: Section 504 of Rehabilitation Act of 1973 (A 504 Plan) of Rehabilitation Act of 1973 (A 504 Plan) prohibits discrimination based upon disabilityprohibits discrimination based upon disability

Who needs an IEP?Who needs an IEP?

• Student Student - With a disability that affects learningWith a disability that affects learning- Who has difficulty reaching normal Who has difficulty reaching normal

educational goals and educational goals and - For whom general curriculum is inaccessibleFor whom general curriculum is inaccessible

• Epilepsy = “other health impairment” Epilepsy = “other health impairment” - Code of Federal Regulations [34 CFR Section Code of Federal Regulations [34 CFR Section

300.8(c)(9)]300.8(c)(9)]• 50% of kids with epilepsy also have some 50% of kids with epilepsy also have some

additional sort of learning disabilityadditional sort of learning disability• Not all students with epilepsy will need an IEPNot all students with epilepsy will need an IEP

IEP: What must be includedIEP: What must be included

1.1. Current Assessment (student’s current performance)Current Assessment (student’s current performance)

2.2. MeasurableMeasurable annual goals annual goals

a.a. SpecificSpecific

b.b. MeasurableMeasurable

c.c. Action verbsAction verbs

d.d. Reasonable, relevant, realisticReasonable, relevant, realistic

e.e. Time specificTime specific

3.3. Steps toward academic progress: How child will be Steps toward academic progress: How child will be helped toward annual goalshelped toward annual goals

4.4. Services to be providedServices to be provided

5.5. Inclusion Inclusion

6.6. AccommodationAccommodation

7.7. Beginning dateBeginning date

8.8. Transition services Transition services

IEP ReviewIEP Review

• IEP reviewed at least IEP reviewed at least annually annually

• Progress assessed / lack Progress assessed / lack of progress addressedof progress addressed

• Anticipates and plans for Anticipates and plans for child’s needs for the child’s needs for the upcoming yearupcoming year

• OPPORTUNITY FOR OPPORTUNITY FOR COMMUNICATION!COMMUNICATION!- Parent Parent ↔↔ School School

The IEP TeamThe IEP Team• ParentParent• Student Student (when & if appropriate)(when & if appropriate)• School representative (guidance counselor, school School representative (guidance counselor, school

nurse, principal, for example)nurse, principal, for example)• Regular education teacherRegular education teacher• Special education teacherSpecial education teacher• Evaluator to interpret educational testingEvaluator to interpret educational testing• Parent may inviteParent may invite

- An advocateAn advocate- Child’s therapistChild’s therapist- Independent educational evaluatorIndependent educational evaluator

Team buildingTeam building

• Request addition of other Request addition of other team members as needed for team members as needed for your child:your child:- P.E. teacherP.E. teacher- School bus driver(s)School bus driver(s)

• Set up communication Set up communication systemssystems- When/under what circumstances When/under what circumstances

you want to be contactedyou want to be contacted- How to reach you (for each team How to reach you (for each team

member)member)- How to reach each of them. How to reach each of them.

Recognize the school’s point of Recognize the school’s point of viewview

• LimitationsLimitations

- StaffStaff

- TimeTime- MoneyMoney

• School’s cultureSchool’s culture

• Defer to them as Defer to them as experts in their experts in their fieldsfields

• Bureaucracy—who Bureaucracy—who holds the real power holds the real power

Parent ResponsibilitiesParent Responsibilities

• Attendance: Be there and be on timeAttendance: Be there and be on time• ProfessionalismProfessionalism

- Dress the partDress the part- Control your emotionsControl your emotions- Be politeBe polite

• Preparation:Preparation:- Keep organized recordsKeep organized records- Bring written notesBring written notes

• Vigilance: Vigilance: - Review records of the IEP meetings Review records of the IEP meetings - Read the IEP document carefullyRead the IEP document carefully

Tips for successTips for success

DODO

• Make eye contactMake eye contact

• Use facts & informationUse facts & information

• Paraphrase what they Paraphrase what they tell youtell you

• Ask clarifying Ask clarifying questions questions - How will it happenHow will it happen- What will happenWhat will happen- WhoWho- WhereWhere

DO NOTDO NOT

• InterruptInterrupt

• ArgueArgue

• AttackAttack• Become angry or Become angry or

emotionalemotional• Share personal Share personal

information that is not information that is not relevantrelevant

Heading off conflictHeading off conflict

• Share concernsShare concerns

• Be politeBe polite• Be truthfulBe truthful• Do not exaggerateDo not exaggerate

• No hidden agenda (Goals clearly and openly No hidden agenda (Goals clearly and openly stated)stated)

• Avoid manipulation to achieve your goalsAvoid manipulation to achieve your goals

• Treat all participants as professionals who care Treat all participants as professionals who care about the student’s welfare and progress.about the student’s welfare and progress.

• Expect to compromise on some issuesExpect to compromise on some issues• Try to work things out before taking it to the next Try to work things out before taking it to the next

levellevel

RESOURCES for IEP helpRESOURCES for IEP help

• Wrights Law: Wrights Law: www.wrightslaw.comwww.wrightslaw.com

- From Emotions to Advocacy, The Special Education Survival From Emotions to Advocacy, The Special Education Survival GuideGuide, by Pam Wright and Pete Wright, Harbor House Law Press, , by Pam Wright and Pete Wright, Harbor House Law Press, Inc. Inc.

• Special Ed Moms: www.specialedmoms.comSpecial Ed Moms: www.specialedmoms.com

• Special Education Law Blog: http://specialedlaw.blogs.comSpecial Education Law Blog: http://specialedlaw.blogs.com

• Council of Parent Attorneys & Advocates: www.copaa.net/index.htmlCouncil of Parent Attorneys & Advocates: www.copaa.net/index.html

• Family Voices Affiliates: www.familyvoices.orgFamily Voices Affiliates: www.familyvoices.org

• Parent Training & Information: www.parentcenterhub.org Parent Training & Information: www.parentcenterhub.org

SECTION V: 504 PLANSECTION V: 504 PLAN

Section 504 of Rehabilitation Act of 1973 Section 504 of Rehabilitation Act of 1973

prohibits discrimination based upon disabilityprohibits discrimination based upon disability

The 504 Plan / An AlternativeThe 504 Plan / An Alternative

• Allows a student who is struggling, yet still does not Allows a student who is struggling, yet still does not meet that school district’s requirements for special meet that school district’s requirements for special education, to receive support.education, to receive support.

• Does not provide special education, only informal Does not provide special education, only informal supportsupport

- 504 students remain in regular classroom504 students remain in regular classroom

• Specifies accommodations which will prevent slipping Specifies accommodations which will prevent slipping further behind. For example:further behind. For example:

- Extra timeExtra time

- Small group instructionSmall group instruction

- A written sheet of all assignmentsA written sheet of all assignments

- A note takerA note taker

- A special planner for time managementA special planner for time management

The 504 Plan – Some adviceThe 504 Plan – Some advice

• Qualifying for a 504 Plan – student’s disability Qualifying for a 504 Plan – student’s disability “substantially limits” performance in one or more “substantially limits” performance in one or more major life activities. major life activities.

• Reevaluation needed if you sense your son/daughter Reevaluation needed if you sense your son/daughter is falling further behind, or not making significant is falling further behind, or not making significant progress (possible qualification for IEP—if progress is progress (possible qualification for IEP—if progress is not made)not made)

• Implementation varies between school districts.Implementation varies between school districts.

• Documentation requirements less stringent, but Documentation requirements less stringent, but parent can have disability & accommodations parent can have disability & accommodations recorded. recorded.

• A Parents’ Guide to 504 Plans: www.greatschools.orgA Parents’ Guide to 504 Plans: www.greatschools.org

SECTION VI: CONCLUSIONSECTION VI: CONCLUSION

A Final Word to ParentsA Final Word to Parents• It is overwhelmingIt is overwhelming• Do learn as much as you can about Do learn as much as you can about

- Your child’s conditionYour child’s condition

- Your school systemYour school system- Special education lawSpecial education law

• Save the negative stuff for a parent support Save the negative stuff for a parent support group, a special education friend, or your group, a special education friend, or your therapisttherapist

• Make time for your other children and your Make time for your other children and your spouse spouse

• TAKE CARE OF YOURSELF TAKE CARE OF YOURSELF

• You are your child’s best cheerleader and You are your child’s best cheerleader and advocateadvocate

RESOURCES for Parent RESOURCES for Parent SupportSupport

Epilepsy Foundation Epilepsy Foundation http://www.epilepsy.com/get-help http://www.epilepsy.com/get-help •Toll-Free 24/7 Helpline: 1-800-332-1000Toll-Free 24/7 Helpline: 1-800-332-1000(en Español 1-866-748-8008) (en Español 1-866-748-8008) Yellow Pages for Kids: www.yellowpagesforkids.com Yellow Pages for Kids: www.yellowpagesforkids.com Families Together: www.familiestogether.orgFamilies Together: www.familiestogether.orgParent-to-Parent USA: www.p2pusa.orgParent-to-Parent USA: www.p2pusa.orgCommunity Services Locator: Community Services Locator: http://www.mchlibrary.info/KnowledgePaths/kp_community.hthttp://www.mchlibrary.info/KnowledgePaths/kp_community.htmlmlThe ARC: http://www.thearc.org/ The ARC: http://www.thearc.org/ Pacer Center: www.pacer.org Pacer Center: www.pacer.org Exceptional Parent Magazine: www.eparent.com Exceptional Parent Magazine: www.eparent.com

Seizure Tracker: www.seizuretracker.com Seizure Tracker: www.seizuretracker.com

RESOURCES for IEPRESOURCES for IEP

• Wrights Law: Wrights Law: www.wrightslaw.comwww.wrightslaw.com

- From Emotions to Advocacy, The Special Education Survival From Emotions to Advocacy, The Special Education Survival GuideGuide, by Pam Wright and Pete Wright, Harbor House Law Press, , by Pam Wright and Pete Wright, Harbor House Law Press, Inc. Inc.

• Special Ed Moms: www.specialedmoms.comSpecial Ed Moms: www.specialedmoms.com

• Special Education Law Blog: http://specialedlaw.blogs.comSpecial Education Law Blog: http://specialedlaw.blogs.com

• Council of Parent Attorneys & Advocates: www.copaa.net/index.htmlCouncil of Parent Attorneys & Advocates: www.copaa.net/index.html

• Family Voices Affiliates: www.familyvoices.orgFamily Voices Affiliates: www.familyvoices.org

• Parent Training & Information: www.parentcenterhub.org Parent Training & Information: www.parentcenterhub.org

RESOURCES for IHPRESOURCES for IHP

Family Voices Affiliates: www.familyvoices.org Family Voices Affiliates: www.familyvoices.org Family Voices of Ohio 6555 Busch Blvd Suite 112 · Family Voices of Ohio 6555 Busch Blvd Suite 112 · Columbus, OH 43229Columbus, OH 43229Phone: (419) 251-8190 · Fax: · Toll-Free: (877) 322-2200Phone: (419) 251-8190 · Fax: · Toll-Free: (877) 322-2200

Epilepsy Foundation & Affiliates: Epilepsy Foundation & Affiliates: http://www.epilepsy.com/get-help http://www.epilepsy.com/get-help •Toll-Free Helpline: 1-800-332-1000Toll-Free Helpline: 1-800-332-1000(en Español 1-866-748-8008)(en Español 1-866-748-8008)•Calls are answered 24 hours a day, 7 days a week.Calls are answered 24 hours a day, 7 days a week.•Forms -- http://www.epilepsy.com/get-help/toolboxForms -- http://www.epilepsy.com/get-help/toolbox

Bullying ResourceBullying Resource

• Stand UpStand Up- Online program for high school Online program for high school

students to help children with social students to help children with social interaction and to decrease bullyinginteraction and to decrease bullying

- Three, 40 minute sessionsThree, 40 minute sessions- For information, call For information, call 216-444-0514216-444-0514

Now we will have a Question Now we will have a Question and Answer sessionand Answer session