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Taking Chiari to School

Taking Chiari to School Suzanne Oro, RN, BSN School Nurse 1 Role of the school nurse: School nursing is a specialized practice of professional nursing that advances the well-being, academic success and life-long achievement and health of students. To that end, school nurses facilitate positive student responses to normal development; promote health and safety including a healthy environment; intervene with actual and potential health problems; provide case management services; and actively collaborate with others to build student and family capacity for adaptation, selfmanagement, self advocacy, and learning (NASN, 2010). 2 The ground rules: Healthy students learn better! No labels! My child can succeed! a. Healthy students learn better. Identifying health related barriers to learning and implementing appropriate interventions in the school setting increases the potential for academic success! b. No Labels! Never allow your child to be labeled! A child should never be defined by an illness or disorder i.e. Paroxysmal rage or behavior disorder? Brain stem compression or vocal chord paralysis? c. My child can succeed! Success- the accomplishment of aim or purpose. Put into perspective for each child’s ability and disability. 3 Why is it important for parents to communicate with the school? Your child spends half of their waking time in the school setting. 4 Communication reinforces continuity of care. Teachers and other education specialists may pick up on subtle clues during the day. We all work together for student/child success. 5 The new alphabet –what does it all mean? 6 Laws affecting students with disabilities. a. Definitions: These three laws affect the education of students with disabilitiesi. IDEA- Individuals with Disabilities in Education Act. ii. Section 504 of the Rehabilitation Act Title II if Americans with Disability act. iii. You have survived medical jargon. Do you speak Educanese? The Individuals with Disabilities Education Act (IDEA) (formerly called P.L. 94-142 or the Education for all Handicapped Children Act of 1975) requires public schools to make available to all eligible children with disabilities a free appropriate public education in the least restrictive environment appropriate to their individual needs. 1. How is disability defined? Autism/TBI/Hearing/Vision/deaf/blind/Vision and/or Speech impairments, Specific Learning, Emotional disability ,Mental retardation, Orthopedic impairment, OTHER HEALTH IMPAIRMENT 2. Child Find Relation to IDEA Required in all states –

a. Birth to age 21 years - Individual Family Service Plan (IFSP) birth to 3 years. Individual Education Plan (IEP). Child - Find is a continuous process of public awareness activities, screening and evaluation designed to locate, identify, and refer as early as possible all young children with disabilities and their families who are in need of Early Intervention Program (Part C) or Preschool Special Education (Part B/619) services of the Individuals with Disabilities Education Act (IDEA)The Individual with Disabilities Education Act (IDEA) targets all children with disabilities aged birth to 21 who reside in the state. Part C of IDEA, early intervention, focuses on children aged birth to three. b. Where will my child fit in? c. How do I know the most appropriate plan? Excellent question- the next slide outlines the 10 basic steps in determining the plan to best meet the educational needs of the child. d. What is IEP? Individual Education Program- IDEA Targeted and intense intervention. Students who require specialized instruction. i. Reviewed annually ii. Measurable growth and goals 1. Includes accommodations iii. Who is involved? iv. SPED process under IDEA v. What is a 504 plan? For students with disabilities who do not require specialized instruction but need the assurance that they will receive equal access to public education and services, a document is created to outline their specific accessibility requirements. Students with 504 Plans do not require specialized instruction, but, like the IEP, a 504 Plan should be updated annually to ensure that the student is receiving the most effective accommodations for his/her specific circumstances. Section 504 - Section 504 states that "no qualified individual with a disability in the United States shall be excluded from, denied the benefits of, or be subjected to discrimination under" any program or activity that either receives Federal financial assistance or is conducted by any Executive agency or the United States Postal Service. Each Federal agency has its own set of section 504 regulations that apply to its own programs.

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Agencies that provide Federal financial assistance also have section 504 regulations covering entities that receive Federal aid. Requirements common to these regulations include reasonable accommodation for employees with disabilities; program accessibility; effective communication with people who have hearing or vision disabilities; and accessible new construction and alterations. Each agency is responsible for enforcing its own regulations. Section 504 may also be enforced through private lawsuits. It is not necessary to file a complaint with a Federal agency or to receive a "right-to-sue" letter before going to court. For information on how to file 504 complaints with the appropriate agency, contact: U.S. Department of Justice Civil Rights Division 950 Pennsylvania Avenue, N.W. Disability Rights Section – NYAV Washington, D.C. 2053019 What type of accommodations should my child have on a 504 plan? Dependent upon symptoms and needs, Self-care abilities? Pain, Mobility, Social/emotional support, Testing Services available in schools SPED a. Speech therapy b. Physical Therapy c. Occupational Therapy d. Nursing services Should my child have a health care plan? a. YES – Rationale, Process, Expected outcomes, Interventions, Communication, Staff education b. What should be on the health care plan? c. Diagnosis and symptoms d. Parent contact information e. Doctor contact information f. Appropriate timely interventions g. Child photo

9. Healthcare Plan – what is included? a. Special training of school personnel b. Modification in the school environment c. Added safety measures d. Measures to relieve pain e. Self-care assistance f. Rehabilitation measures g. Treatments orders for special procedures h. Special diet 10. Medications or interventions for emergencies 11. Is your child’s Healthcare Plan SMART? a. Simple- remember the reader b. Measurable outcomes c. Achievable- realistic d. Relevant- to the student e. Time specific- for that year 12. When should I be called? 13. Anytime your child presents to the health office a. To report any injury- especially impacts to the head b. To report any changes observed- acutely or over time c. Hearing and Vision i. Every state has different guidelines d. Essential sensory input - facilitate learning and academic success e. Pay attention to the reports that come home. f. Hearing- sensorineural hearing loss or hyperacusis Visionchanges in acuity 14. The “not so” little things that add up. a. Sleep, Nutrition, Emotional threshold, Growth and developmental changes- stay informed i. Activity28As a parent, what are my responsibilities? b. Advocacy, Communication, Support the school, Provide resources for student success. Send your child to school prepared and ready to learn. i. Advocacy- make your child’s needs known. Every child needs a champion. ii. Communication- timely communication in a positive tone is most effective in the development of the long term relationship with your child’s teachers and other professional school personnel. Support your child’s school! iii. Volunteer and become an active part of the community. The National Parent Teacher Association identifies parent involvement in schools as a primary indicator of school success.

iv. Provide resources for student success- your greatest resource is your time- volunteer. Send your child to school prepared and ready to learn. References 1 Aitken, L. A., Lindan, C. E., Sidney, S. S., Gupta, N. N., Barkovich, A. J., Sorel, M. M., & Wu, Y. W. (2009). Chiari Type I Malformation in a Pediatric Population. Pediatric Neurology, 40(6), 449-454. doi:10.1016/j.pediatrneurol.2009.01.003 Ellis, A. L., Griffin, C., & Kolar, K. (2004). Research to Reality: Applying Findings to Practice. Journal of School Nursing (Allen Press Publishing Services Inc.), 20(6), 359. Greenlee, J. W., Donovan, K. A., Hasan, D. M., & Menezes, A. H. (2002). Chiari I Malformation in the Very Young Child: The Spectrum of Presentations and Experience in 31 Children Under Age 6 Years. Pediatrics, 110(6), 1212. Lockhart, A. T. (2008). Case Presentation: Treatment of Adolescent Diagnosed With Arnold-Chiari Malformation. Washington, District of Columbia, US: American Psychological Association (APA). McGirt, M., Attenello, F., Atiba, A., Garces-Ambrossi, G., Datoo, G., Weingart, J., & ... Jallo, G. (2008). Symptom recurrence after suboccipital decompression for pediatric Chiari I malformation: analysis of 256 consecutive cases. Child's Nervous System: Chns: Official Journal Of The International Society For Pediatric Neurosurgery, 24(11), 1333-1339. National Association of School Nurses. (2010). NASN- Role and Career. Retrieved from http://www.nasn.org/RoleCareerSchwedt, T., Guo, Y., & Rothner, A. (2006). "Benign" imaging abnormalities in children and adolescents with headache. Headache, 46(3), 387-398. Simons, J., Ruscetta, M., & Chi, D. (2008). Sensorineural hearing impairment in children with Chiari I malformation. Annals of Otology, Rhinology & Laryngology, 117(6), 443-447. Vannemreddy, P., Nourbakhsh, A., Willis, B., & Guthikonda, B. (2010). Congenital Chiari malformations. Neurology India, 58(1), 6-14. 30

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