Early Childhood and

Elementary School

Educational Rights

Saturday, July 25, 2015 – Parent Breakout

2:00 PM – 3:15 PM

Moderator: John Leanes

Co-Presenters: Sandra Leanes, Nina

Gregory, Norma Liburd, Heidi Sloan

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SANDRA LEANES • 30 YEARS IN PINELLAS COUNTY SCHOOLS

• SERVING AS A SPECIAL EDUCATION TEACHER and STAFFING COORDINATOR

• GUIDANCE COUNSELLOR

• ASS'T PRINCIPAL

• ALTERNATIVE ED PROGRAM COORDINATOR

• ELEMENTARY SCHOOL PRINCIPAL

• ADJUCT PROFESSOR AT UNIVERSITY OF SOUTH FLORIDA AND NATIONAL LOUIS UNIVERSITY

• COORDINATOR WITH FLORIDA DEPARTMENT OF ED COUNCIL FOR EDUCATIONAL CHANGE

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JOHN LEANES • 35 YEARS IN PINELLAS COUNTY SCHOOLS

• 30 AS AN ADMINISTRATOR

• ASST.PRINCIPAL

• MIDDLE AND HIGH SCHOOL PRINCIPAL

• ASSISTANT SUPERINTENDENT.

• ADJUNCT PROFESSOR AT NATIONAL LOUIS UNIVERSITY

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Nina Gregory • Educator in Pasco County for 18 years.

• Medical Laboratory Technologist for 17 years, various hospitals & laboratories in New York and Florida.

• Master’s Degree in Education from the University of South Florida in 2001.

• Taught on every level of the special education continuum of service

– co-teach model, parallel curriculum, special standards, on-the-job training and transition specialist.

Nina Gregory

• Passion for helping students and families connect with resources; facilitate a successful and positive post-school outcome.

• Florida Diagnostic Learning and Resources System (FDLRS) in October of 2008 as a resource specialist for two of the four FDLRS functions, Parent Services and Technology.

• Parent of a 26 year old special needs child.

Nina Gregory

• Attend IEP meetings; help parents navigate process & school system

• Provide parents with resources & technical assistance related to IEP &504 compliance

• I provide presentations to parent groups and conference regarding Transition Planning and Planning for the future of children with IEPs

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Information/resources specific to Florida

• Florida Department of Education

– http://www.fldoe.org/academics/exceptional-student-edu

• www.gulfcoast.fdlrs.org

• http://fdlrs-gulfcoast.wikispaces.com/Parent+Services+Resources

Norma Liburd, RN-C, MN Clinical Nurse Specialist

Rheumatology at All Children’s Hospital

• Clinical Nurse Specialist in Pediatric Rheumatology for many years: clinical expertise, consultation, education, research, leadership & advocacy regarding school issues

• Volunteer with the Arthritis Foundation as conference planner, national newsletter editor, committee member, children’s activity leader, & Arthritis Walk fundraiser

• Camp Nurse at Camp Boggy Creek & Camp Funrise

• Founder and coordinator of PRN Network, an international list-serve for pediatric rheumatology nurses

• Member of ARHP (Association of Rheumatology Health Professionals)

• Coordinator of the Rheum Service Credit Program which rewards kids with rheumatic diseases who cooperate with their needle sticks. (They earn Target and Walmart gift cards!)

My Role/Experience

• 80% of our kids with a rheumatic diagnosis receive an accommodations letter

• We meet with each family to discuss school issues & strategies for accommodation

• Give letter to school nurse, guidance counselor, and principal

• Keep a copy in backpack for emergencies

• Give a copy to all teachers

• Write in additional information

• Refer family to the Educational Rights Toolkit for additional resources

• Provide “Juvenile Arthritis: A Teacher’s Guide”

• Refer to “Juvenile Arthritis: Kids Get it Too – What Educators Need to Know About Juvenile Arthritis” (arthritis.ca)

School Accommodations

• Include what joints are affected • PE: Do not force to run. OK to walk if tolerated • May use wheelchair if needed • Reduce the amount of writing • Provide class notes • Allow rolling backpack • Allow to use heating pad/ice pack as needed • Allow to sit in the front of class (if vision

problems) • Allow to use the bathroom (REALLY!?) • Referral to Vocational Rehabilitation

Accommodations Letter Add-ons

• Elevator: Teacher has to call another person with key causing student to repeatedly miss next class or lunch waiting for elevator

• Not permitted extra time for tests: INCLUDING COLLEGE BOARD EXAMS.

• Getting detentions, being yelled at for being late

• Missing too many school days and not allowed to participate in special events

• Missing too many school days and not allowed to get drivers permit/license

• Missing > 5 school days and not permitted to exempt final exams if you have good grades.

• A few teachers’ lack of sensitivity, understanding, confidentiality

Problems that occur despite a 504 plan

• The rheumatology school letter has been an essential communication tool between the rheumatology team and the school.

• The School RN can be a key member of the educational team, and a great advocate for a child/teen with a rheumatic disease.

• Our kids now have a variety of options: regular school, private school, Florida Virtual School, county based virtual school, part time attendance, homebound, intermittent homebound, as well as home schooling.

• The vast majority of our patients attend regular school with accommodations.

The Good News

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http://www.kidsgetarthritistoo.org/resources/educational-rights-kit/

Kids Get Arthritis Too (KGAT) Educational Rights Toolkit

Heidi Sloan • My Journey

– Born in Upstate New York , diagnosed with Arthritis at age 3

– Old school meds & NEVER took a PE class or played sports

– Family moved to FL for hopes of better weather & better days

– Community volunteer work through high school service clubs

– Pursued passion for geriatrics with BS Degree of Science in therapeutic recreation and gerontology from UF

Sloan Family • Married Bobby, Started Family

• Two beautiful children

• Both diagnosed with Juvenile Arthritis- Systemic

– Career Ended

Our Educational Journey

• Jake’s and Hannah’s Educational Journey – School Settings

• Private school, Hospital Homebound & Homeschool

– As their caregiver, also became Homeschool Educator

• My “Take-Home” Message for Parents – Get as organized as possible

– Advocate, Communication is key!