Epilepsia Video-Tele-conferencia O lga M aría S ánchez - F arah Community Education Specialty Liderazgo y Excelencia en Diferencias Neurológicas 2007

3 Epilepsy Moments which Disappeared…Moments which Disappeared… A crisis for my Child…A crisis for my Child… A crisis in his Brain…A crisis in his Brain… A crisis for my Family…A crisis for my Family… Better Language Access will enhance the:Better Language Access will enhance the: Understanding of Alexanders Diagnosis…. Understanding of Alexanders Diagnosis…. Mi Hijo Tiene Epilepsia y Mi Familia Habla Español Epilepsia es una de las muchas diferencias neurológicas, causada por el Síndrome de 4p-

4 A grant…A funding Source… and … A Goal… Sponsored by the Grant: Improving Access to Care for Children/Youth with Epilepsy in California # 822TGF , # 822TGF , a project funded by the Maternal and Child Health Bureau, Department of Health and Human Services (MCHB, HRSA, DHHS); the Epilepsy Foundation of Northern California, the Rowell Family Empowerment of Northern California; and the Northern Sierra Rural Health Network. a project funded by the Maternal and Child Health Bureau, Department of Health and Human Services (MCHB, HRSA, DHHS); the Epilepsy Foundation of Northern California, the Rowell Family Empowerment of Northern California; and the Northern Sierra Rural Health Network. Patrocinado por una beca monetaria para: Mejorando el Acceso de Cuidado para Niños y Jovenes con Epilepsia en California #822TGF un Proyecto patrocinado por La Oficina Federal de la Salud Maternal y La Salud del Niño, el Departamento de Salud y de los Servicios Humans, La Fundación para la Epilepsia del Norte de California y otros Grupos tales como Centros de Recursos Familiares del Comienzo Temprano.

5 The Goal To Provide Quality Information, via via Best Practices, and Best Practices, and To Facilitate the Access to Translated Educational Resources to ensure that Spanish speaking Families in the state of California, (with a focus on rural communities ) have access to such Materials presented by Medical Faculty On the neurological Difference topic of: EPILEPSY

6 Planning the Video Tele-Conference CollaborationCollaboration PartnershipsPartnerships Needs AssessmentNeeds Assessment Speaker RecruitmentSpeaker Recruitment The Invitation: FlyerThe Invitation: Flyer The SitesThe Sites TranslationTranslation The EventThe Event EvaluationsEvaluations

7 Needs Assessment Surveys Solano Health Partnership 20 Spanish speaking families Physicians Survey FRCNLAC Surveys Families from 3 F. Resource Centers 20 families

8 Partnerships FRCNCAFRCNCA Regional CentersRegional Centers North Sierra Health NetworkNorth Sierra Health Network Epilepsy Foundation of Northern CaliforniaEpilepsy Foundation of Northern California The Education DepartmentThe Education Department

9 Finding the Speaker Finding the Speaker Language AccessLanguage Access Academic ExcellenceAcademic Excellence Being Part of the TEAM –Being Part of the TEAM – Collaboration is Essential Collaboration is Essential Successful Positional Partnerships… The delivery = Excellence

10 The Sites –>The Audience-> Connecting Them # of sites 16# of sites 16 Connecting the FamiliesConnecting the Families

11 Material Translation/Enhancing Cultural Competence

12 The Event The Date…The Date… The Groups…The Groups… The Action…The Action… The Camera, The Speaker, The Presentation…The Camera, The Speaker, The Presentation…TV….Camera….Ready GOOOOOO!!!!!!!!!!!!!GOOOOOO!!!!!!!!!!!!!

13 Excellence/Excelencia What Families wanted to LearnWhat Families wanted to Learn What our Speaker was able to conveyWhat our Speaker was able to conveyEPILEPSIA Aprendiendo por medio de la Sabiduría Médica y la colaboración de Líderes Soñadores en la Comunidad, en la ciudades y pueblos, en el Estado.

14 Lessons Learned: Prepare for the Unexpected Losing the Connection & getting everyone back on.Losing the Connection & getting everyone back on. Ensuring everyone got to ask at least one Question.Ensuring everyone got to ask at least one Question. Smile…Smile… The Rounds…The Rounds… Not enough time for questions…

15 Basic Stats Total# of sites participating: 16 Total # of Parents40 – 55 ( not all sites turned in the sign in and the evaluations.) USC CHLA – Families from 5 diff. cities Northern Sierra –Redding Central Valley Regional Center, Visalia Office Inland Regional Center: Riverside Kings View – Fresno Victor Community Support –Chico North L A Regional Center: Santa Clarita Antelope Valley Berkeley Modoc Medical Center – Alturas Sacramento San Andreas Regional Center Gilroy Salinas Cutter- Orosi School Woodlake School San Diego County Office of Education

16 Evaluations What Families liked What Families didnt like Ways to Improve Moments that do not Disappear … Momentos de Aprendizage Familiar… Epilepsia… Una Diferencia … Aprendiendo con los Expertos…

17 Lecciones Aprendidas/Lecciones Compartidas Lessons Learned/Lessons Shared (epilepsy/march07) Spanish Speaking Families REAllY benefit from Professional Educational PresentationsSpanish Speaking Families REAllY benefit from Professional Educational Presentations We have once again confirmedWe have once again confirmed Families benefit from equal Language Access Begin Planning of Actual Event: Begin Planning of Actual Event: 6 months in advance Biggest Challenge: Getting the Sites and the Families Inter-Connected…. Multi Agency Collaboration continues to be the IDEAL WE must truly continue to work TOGETHER for the Families… The Vision : Lead to Perfection The Vision : Lead to Perfection The Mission: Dare to Dream and eventually …Achieve that Dream… The Topic:Epilepsy in Spanish The Result: SUCCESS Community Education –Specialty Human Services, Visions and Missions – Cultural Effectiveness and Language Access…from the UCEDD to Us Families… From Family Support -> to L.E.N.D->To the UCEDD

18 R ecuerdos d el G rupo q ue se R eunió en C.H.L.A./U.S.C.U.C.E.D.D.. Memories from March 29 th, 2007

19 Where do We go From Here? ?????????? We Have Only Just Begun…We Have Only Just Begun… Any questions: Or

20 …Why do I care about Epilepsy so much? Porque Alexander John Francis Farah tiene Epilepsia Why did I want to Do my Specialty Concentration for Spanish Speaking Families?Why did I want to Do my Specialty Concentration for Spanish Speaking Families? Because I believe that empowering families as they learn new languages and cultures is a human service that We as a Rich and Competent Society could afford to provide to the needy and to the fragile… as they attend to their child with Special Health Care Needs… Olga María Sónchez--Farah Family Support Fellowship 2007 – C..H..L..A..U.S.C.U.C.E.D.D. C..H..L..A..U.S.C.U.C.E.D.D.