EpilepsiaEpilepsiaVideo-Tele-conferenciaVideo-Tele-conferencia

OOlgalga MMaríaaría SSááncheznchez--FFaraharahCommunity Education SpecialtyCommunity Education Specialty

Liderazgo y Excelencia en Liderazgo y Excelencia en Diferencias NeurolDiferencias Neurolóógicasgicas

20072007

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EpilepsyEpilepsy• Moments which Moments which

Disappeared…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 Better Language Access will enhance the:will enhance the:

Understanding of Alexander’s Understanding of Alexander’s Diagnosis….Diagnosis….

Mi Hijo Tiene EpilepsiaMi Hijo Tiene Epilepsiay y

Mi Familia Habla EspañolMi Familia Habla EspañolEpilepsia es una de las muchas Epilepsia es una de las muchas

diferencias neurológicas, causada por diferencias neurológicas, causada por el Síndrome de 4p-el Síndrome de 4p-

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A grant…A funding A grant…A funding Source…Source…andand……

A Goal…A Goal…Sponsored by the Grant:Sponsored by the Grant:

Improving Access to Improving Access to Care for Children/Youth Care for Children/Youth with Epilepsy in with Epilepsy in CaliforniaCalifornia # 822TGF000016-03,# 822TGF000016-03, a project funded by the a project funded by the Maternal and Child Health Maternal and Child Health Bureau, Department of Bureau, Department of Health and Human Health and Human Services (MCHB, HRSA, Services (MCHB, HRSA, DHHS); the Epilepsy DHHS); the Epilepsy Foundation of Northern Foundation of Northern California, the Rowell California, the Rowell Family Empowerment of Family Empowerment of Northern California; and Northern California; and the Northern Sierra Rural the Northern Sierra Rural Health Network.Health Network.

Patrocinado por una beca Patrocinado por una beca monetaria para:monetaria para:

Mejorando el Acceso de Mejorando el Acceso de Cuidado para Niños y Cuidado para Niños y Jovenes con Epilepsia en Jovenes con Epilepsia en CaliforniaCalifornia #822TGF000016-03 #822TGF000016-03 un Proyecto patrocinado por un Proyecto patrocinado por La Oficina Federal de la La Oficina Federal de la Salud Maternal y La Salud Salud Maternal y La Salud del Niño, el Departamento del Niño, el Departamento de Salud y de los Servicios de Salud y de los Servicios Humans, La Fundación para Humans, La Fundación para la Epilepsia del Norte de la Epilepsia del Norte de California y otros Grupos California y otros Grupos tales como Centros de tales como Centros de Recursos Familiares del Recursos Familiares del Comienzo Temprano.Comienzo Temprano.

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The GoalThe Goal

To Provide Quality Information,To Provide Quality Information,

viavia

Best Practices, and Best Practices, and

To Facilitate the Access to To Facilitate the Access to

Translated Educational Resources Translated Educational Resources

to ensure that Spanish speaking to ensure that Spanish speaking

Families in the state of California, (with a focus on Families in the state of California, (with a focus on rural rural

communities ) have access to such Materials communities ) have access to such Materials

presented by Medical Faculty presented by Medical Faculty

On the neurological Difference topic of:On the neurological Difference topic of:

EPILEPSYEPILEPSY

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Planning the Video Tele-Planning the Video Tele-ConferenceConference

• CollaborationCollaboration• PartnershipsPartnerships• Needs AssessmentNeeds Assessment• Speaker RecruitmentSpeaker Recruitment• The Invitation: FlyerThe Invitation: Flyer• The SitesThe Sites• TranslationTranslation• The EventThe Event• EvaluationsEvaluations

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Needs AssessmentNeeds Assessment

Surveys

Solano Health Partnership Physicians Survey FRCNLAC Surveys

20 Spanish speaking families Families from 3 F. Resource Centers

20 families

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PartnershipsPartnerships• FRCNCAFRCNCA

• Regional CentersRegional Centers

• North Sierra Health North Sierra Health NetworkNetwork

• Epilepsy Foundation Epilepsy Foundation of Northern Californiaof Northern California

• The Education The Education DepartmentDepartment

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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 Successful Positional Partnerships…Partnerships…

The delivery = ExcellenceThe delivery = Excellence

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The Sites –>The Audience-> The Sites –>The Audience-> Connecting ThemConnecting Them

• # of sites 16# of sites 16

• Connecting the Connecting the FamiliesFamilies

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Material Material Translation/Enhancing Translation/Enhancing Cultural CompetenceCultural Competence

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The EventThe Event

• The Date…The Date…• The Groups…The Groups…• The Action…The Action…• The Camera, The The Camera, The

Speaker, The Speaker, The Presentation…Presentation…

TV….Camera….ReadyTV….Camera….Ready

• GOOOOOO!!!!!!!!!!GOOOOOO!!!!!!!!!!!!!!!!

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Excellence/Excellence/ExcelenciaExcelencia

• What Families wanted to LearnWhat Families wanted to Learn• What our Speaker was able to conveyWhat our Speaker was able to convey

EPILEPSIAEPILEPSIA

Aprendiendo por medio de la Sabiduría Médica y la Aprendiendo por medio de la Sabiduría Médica y la colaboración de Líderes Soñadores en la Comunidad, en la colaboración de Líderes Soñadores en la Comunidad, en la

ciudades y pueblos, en el Estado.ciudades y pueblos, en el Estado.

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Lessons Learned:Lessons Learned:

Prepare for the UnexpectedPrepare for the Unexpected

• Losing the Connection & getting Losing the Connection & getting everyone back on.everyone back on.

• Ensuring everyone got to ask at least Ensuring everyone got to ask at least one Question.one Question.

• Smile…Smile…• The Rounds…The Rounds…

Not enough time for questions…Not enough time for questions…

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Basic StatsBasic StatsTotal# of sites Total# of sites participating: participating: 1616

Total # of ParentsTotal # of Parents 40 – 55 40 – 55 ( not all sites turned in ( not all sites turned in the sign in and the evaluations.)the sign in and the evaluations.)

• USC CHLA – Families from 5 USC CHLA – Families from 5 diff. citiesdiff. cities

• Northern Sierra –ReddingNorthern Sierra –Redding• Central Valley Regional Center, Central Valley Regional Center,

Visalia OfficeVisalia Office• Inland Regional Center: Inland Regional Center:

RiversideRiverside• Kings View – FresnoKings View – Fresno• Victor Community Support –Victor Community Support –

ChicoChico• North L A Regional Center:North L A Regional Center:• Santa Clarita Santa Clarita • Antelope ValleyAntelope Valley• BerkeleyBerkeley• Modoc Medical Center – AlturasModoc Medical Center – Alturas• SacramentoSacramento• San Andreas Regional Center San Andreas Regional Center • GilroyGilroy• SalinasSalinas• Cutter- Orosi SchoolCutter- Orosi School• Woodlake SchoolWoodlake School• San Diego County Office of San Diego County Office of

EducationEducation

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EvaluationsEvaluations

• What Families likedWhat Families liked• What Families didn’t What Families didn’t

likelike• Ways to ImproveWays to Improve• Moments that do Moments that do

not Disappearnot Disappear……

• Momentos de Momentos de Aprendizage Familiar…Aprendizage Familiar…

Epilepsia…Epilepsia…Una Una DiferenciaDiferencia……

Aprendiendo con Aprendiendo con los Expertos…los Expertos…

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Lecciones Aprendidas/Lecciones Lecciones Aprendidas/Lecciones CompartidasCompartidas

Lessons Learned/Lessons Shared (epilepsy/march07)Lessons Learned/Lessons Shared (epilepsy/march07)• Spanish Speaking Families Spanish Speaking Families ““REAllY”REAllY” benefit from Professional Educational Presentations benefit from Professional Educational Presentations

• We have once again confirmed We have once again confirmed Families benefit from equal Language AccessFamilies benefit from equal Language Access

• Begin Planning of Actual Event: Begin Planning of Actual Event: 6 months in advance6 months in advance

Biggest Challenge: Biggest Challenge: Getting the Sites and the Families “Inter-Connected….”Getting the Sites and the Families “Inter-Connected….”

Multi Agency Collaboration continues to be the “Multi Agency Collaboration continues to be the “IDEAL”IDEAL”WE must truly continue to work WE must truly continue to work TOGETHERTOGETHER for the Families… for the Families…

The Vision :The Vision : “ Lead to Perfection “ “ Lead to Perfection “The Mission: The Mission: “Dare to Dream and eventually …Achieve that “Dare to Dream and eventually …Achieve that

Dream…”Dream…”The Topic:The Topic: Epilepsy in SpanishEpilepsy in SpanishThe Result:The Result: SUCCESS SUCCESS

Community Education –SpecialtyCommunity Education –SpecialtyHuman Services, Visions and Missions – Human Services, Visions and Missions –

Cultural Effectiveness and Language Access…from the UCEDD to Us Families…Cultural Effectiveness and Language Access…from the UCEDD to Us Families…From Family Support -> to L.E.N.D->To the UCEDDFrom Family Support -> to L.E.N.D->To the UCEDD

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RRecuerdosecuerdos d del el GGruporupo

q queue sese R Reunióeunió enen C.H.L.A./U.S.C.U.C.E.D.D.C.H.L.A./U.S.C.U.C.E.D.D.

..Memories from March 29Memories from March 29thth, 2007, 2007

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Where do We go From Here?Where do We go From Here?

• ??????????

• We Have Only Just Begun…We Have Only Just Begun…

Any questions:Any questions: olgasfchw@yahoo.comolgasfchw@yahoo.comOrOr

310-791-0773310-791-0773

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……Why do I care about Epilepsy so much?Why do I care about Epilepsy so much?PorquePorque

Alexander John Francis Farah Alexander John Francis Farah tiene tiene

EpilepsiaEpilepsia• Why did I want to Do my Why did I want to Do my

Specialty Concentration for Specialty Concentration for Spanish Speaking Families?Spanish Speaking Families?

Because I believe that Because I believe that empowering families as they empowering families as they learn new languages and learn new languages and cultures is a human service cultures is a human service that We as a Rich and that We as a Rich and Competent Society could Competent Society could afford to provide to the afford to provide to the needy and to the fragile…needy and to the fragile…

as they attend to their child as they attend to their child with with

Special Health Care Needs…Special Health Care Needs…Olga María Sónchez--FarahOlga María Sónchez--Farah

Family Support Fellowship 2007 –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.