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DBI World Conference 2019 - Quilting family stories

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DBI World Conference 2019
Accessibility stream: Concurrent session 1E
Presenter: Yvette Gallegos, Graciela Feriloi & Dr Namita Jacob
Topic: Quilting family stories

Published in: Healthcare
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DBI World Conference 2019 - Quilting family stories

  1. 1. QUILTING FAMILY STORIES Graciela Ferioli Yvette Gallegos Namita Jacob
  2. 2. QUILTING FAMILY STORIES ● Why did we use this word quilting? ● Whose words will you hear? ● Why do you see Square Paper on your chair?
  3. 3. THINKING BEYOND PARENTS https://docs.google.com/presentation/d/1-CHI074JF4d-D-UXhn20IfuylAGt8LVrvOZzExQpRDA/edit#slide=id.g5cef71993e_2_107
  4. 4. CHALLENGES SOLUTIONS ISOLATION - Promote the creation of “Siblings groups” - Encourage virtual or presential meetings - Use social media: facebook & whatsapp groups LACK OF SERVICES - provide information about other sibling (DbI Sibling network / Perkins activities with siblings) - Organize different activities for siblings from early ages - Mediate or promote contact between them ACCESS TO INFORMATION - Through the Parent Associations Argentina & Venezuela https://www.facebook.com/appsmaargentina/ https://www.facebook.com/massiel.requena.5243 Radio:Rompiendo Esquemas from Argentina https://www.facebook.com/rompiendoesquemasdesdelaplata/ THINKING BEYOND PARENTS
  5. 5. LOVE IS NOT ENOUGH https://docs.google.com/presentation/d/1-CHI074JF4d-D-UXhn20IfuylAGt8LVrvOZzExQpRDA/edit#slide=id.g5cef71993e_2_111
  6. 6. CHALLENGES SOLUTIONS ISOLATION - Help them focus on “all their child CAN” - Social Media: facebook, whatsapp groups - Promote team work (transdisciplinary approach) between health and education departments - Create opportunities for parents gatherings like “School for parents” LACK OF SERVICES - Promote the creation of parents groups - Switch from the therapeutic perspective to a view of the “Whole Child” in our early education services. - FB “Red Padres Múltiple Discapacidad México ACCESS TO INFORMATION - Give access to the written material that has already been translated into different languages. - Share links from other countries: - WONDERBABIES.ORG - California deafblind services - Refer them to Parent organizations that have already been working in this field like the Venezuelan facebook page. LOVE IS NOT ENOUGH
  7. 7. BALANCING FAMILY DREAMS https://docs.google.com/presentation/d/1-CHI074JF4d-D-UXhn20IfuylAGt8LVrvOZzExQpRDA/edit#slide=id.g5cef71993e_0_1
  8. 8. CHALLENGES SOLUTIONS ISOLATION ● Social Media: facebook, whatsapp groups ● Connect with adults who are deafblind ● Connect families with parents of children with other disabilities ● Connect with other families or family groups in the region LACK OF SERVICES ● Advocacy through disability and child rights movements ● Use online communities to guide service providers ● Use community volunteers to support in school ● “Be the change you want to see in the world” ACCESS TO INFORMATION ● Website for everything! ● Google translate for language limitations ● Free online courses ● Push to bring knowledge into teacher and health professional education BALANCING FAMILY DREAMS
  9. 9. QUILT´S NAME: CELEBRATING THE ALLIANCES BETWEEN THE FAMILIES AND PROFESSIONALS AROUND THE WORLD
  10. 10. Alex has taught us that when walking with him, the distance is less important than how well his feet touch the ground.

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