Epilepsia
Video-Tele-conferencia
Olga María Sánchez-Farah
Community Education Specialty
Liderazgo y Excelencia en Diferencias Neurológicas
2007
Epilepsy
• Moments which Disappeared…
Mi Hijo Tiene Epilepsia
y
• A crisis for my Child…
Mi Familia Habla Español
Epilepsia es una de las muchas diferencias neurológicas,
causada por el Síndrome de 4p-
• A crisis in his Brain…
• A crisis for my Family…
• Better Language Access will
enhance the:
Understanding of Alexander’s
Diagnosis….
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A grant…A funding Source…and…
A Goal…
Sponsored by the Grant:
Improving Access to Care
for Children/Youth with
Epilepsy in California
# 822TGF000016-03,
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
#822TGF000016-03
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.
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The Goal
To Provide Quality Information,
via
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
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Planning the Video Tele-Conference
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Collaboration
Partnerships
Needs Assessment
Speaker Recruitment
The Invitation: Flyer
The Sites
Translation
The Event
Evaluations
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Needs Assessment
Surveys
Solano Health Partnership
20 Spanish speaking families
Physicians Survey
FRCNLAC Surveys
Families from 3 F. Resource Centers
20 families
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Partnerships
• FRCNCA
• Regional Centers
• North Sierra Health Network
• Epilepsy Foundation of
Northern California
• The Education Department
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Finding the Speaker
• Language Access
• Academic Excellence
• Being Part of the TEAM –
Collaboration is Essential
Successful Positional Partnerships…
The delivery = Excellence
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The Sites –>The Audience->
Connecting Them
• # of sites 16
• Connecting the Families
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Material Translation/Enhancing
Cultural Competence
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The Event
• The Date…
• The Groups…
• The Action…
• The Camera, The Speaker,
The Presentation…
TV….Camera….Ready
• GOOOOOO!!!!!!!!!!!!!
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Excellence/Excelencia
• What Families wanted to Learn
• What our Speaker was able to convey
EPILEPSIA
Aprendiendo por medio de la Sabiduría Médica y la colaboración de Líderes Soñadores en la
Comunidad, en la ciudades y pueblos, en el Estado.
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Lessons Learned:
Prepare for the Unexpected
• Losing the Connection & getting everyone back
on.
• Ensuring everyone got to ask at least one
Question.
• Smile…
• The Rounds…
Not enough time for questions…
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Basic Stats
Total# of sites
participating:
16
Total # of Parents
40 – 55
( not all sites turned in
the sign in and the evaluations.)
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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
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San Diego County Office of Education
Evaluations
• What Families liked
• What Families didn’t like
• Ways to Improve
• Moments that do not
Disappear…
• Momentos de Aprendizage
Familiar…
Epilepsia…
Una Diferencia…
Aprendiendo con los
Expertos…
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Lecciones Aprendidas/Lecciones Compartidas
Lessons Learned/Lessons Shared
(epilepsy/march07)
•
Spanish Speaking Families “REAllY” benefit from Professional Educational Presentations
•
We have once again confirmed
Families benefit from equal Language Access
•
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 :
The Mission:
The Topic:
The Result:
“ Lead to Perfection “
“Dare to Dream and eventually …Achieve that Dream…”
Epilepsy in Spanish
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
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Recuerdos del Grupo
que se Reunió en
C.H.L.A./U.S.C.U.C.E.D.D.
.Memories from March 29
th,
2007
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Where do We go From Here?
•
?????
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We Have Only Just Begun…
Any questions:
[email protected]
Or
310-791-0773
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…Why do I care about Epilepsy so much?
Porque
Alexander John Francis Farah
tiene
• Why did I want to Do my Specialty
Concentration for Spanish Speaking
Families?
Epilepsia
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.
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Epilepsia Video-Teleconferencia