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Juntos Podemos! Together We Can!

Juntos Podemos! Together We Can!. Effective Strategies to Support Spanish-Speaking Families of Children with Deaf-Blindness. Getting Ready: Identifying Families. Identifying families through existing resources DB FACES SCHS (Title V Program of NJ Department of Health) & EI

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Juntos Podemos! Together We Can!

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  1. Juntos Podemos!Together We Can! Effective Strategies to Support Spanish-Speaking Families of Children with Deaf-Blindness

  2. Getting Ready: Identifying Families • Identifying families through existing resources • DB FACES • SCHS (Title V Program of NJ Department of Health) & EI • Programs serving children with deafness/hearing loss or blindness/visual impairment • CBOs serving Latino families

  3. Getting Ready: Developing Protocols • Identified existing validated surveys on family support • In consultation with Latina SPAN staff & Resource parents & national & NJ DB TA projects, revised to target goals of project & reflect focus group questions

  4. Getting Ready: Reaching Out • Sent letters in English & Spanish to identified families • Introduced ourselves & purpose • Asked how, where, & when would like to meet • Asked about needs • Informed re: available supports for participation

  5. Getting Ready: Follow Up • Spanish-speaking staff attempted to contact each family by phone • Ensure received letter • Ascertain interest • Identify dates, topics, locations, etc. • Barriers • Not all identified students had #s • Wrong #s • Disconnected #s

  6. Getting Ready: Compiling Materials • Worked with national & NJ DB TA projects to identify existing materials in Spanish • Latina SPAN staff reviewed & identified key materials to use

  7. Holding 1st Meeting! • North Jersey • Accessible location in community-based organization serving Spanish-speaking families • Provided transportation, child care, food, gifts, & immediate reimbursement • Conducted focus group

  8. Holding 1st Meeting • Fewer families identified in Central & South Jersey; much smaller initial meeting • Identified need to do additional outreach & family support • Conducted focus group over the phone with families who did not attend

  9. Analyzing the Information • Reviewed focus group information • Barriers to accessing info & supports • Lack of knowledge of supports • Mistreatment by government agencies • Failure of agencies to provide translation & interpretation services • Materials too complicated

  10. Parents’ Feelings • Most families didn’t know about: • Resources • SPAN • DB FACES • DDD & respite • Catastrophic Illness in Children relief fund • Rights in special education process • Other children & families in the same situation • What was happening with their children in school

  11. Parents’ Feelings • Parents were afraid to: • Ask questions • Visit their children’s school • Disagree with school personnel • Parents often felt: • Hopeless • Sad & depressed • Overwhelmed • Alone

  12. Parents’ Feelings at Focus Group • Able to attend because of the supports • Could pay for responsible babysitter • Could get to and from the meeting • Knew it would be in their language • Knew they would meet other families with similar experiences

  13. Parents’ Feelings at Focus Group • Connections to other parents made them feel less alone • Connections to resources made them feel more hopeful • Talking about their children released their stress

  14. Deciding Next Steps • Met with all partners including a parent leader identified through first focus group • Developed an action plan for a year of follow-up activities

  15. Action Plan Purpose • Help families: • Understand children’s strengths & needs • Built trust & improve communication with their children & with service providers • Navigate community & agency resources • Participate more effectively in decision-making • Follow through more effectively on recommendations of professionals re: children • Build parent leadership & peer-to-peer support

  16. Action Plan Summary • Monthly activities • Support group • Workshops on critical issues • Parent to Parent orientation • Attendance at SPAN conference • Participation in other focus groups

  17. Action Plan Summary • Other activities • Home visits • Attendance at IEP meetings • Ongoing communication • Connecting families to other service providers & to each other

  18. Positive Impacts • Families providing emotional support to each other • Families understanding their rights in the IEP process • Families having higher expectations for their children • Families feeling more connected to DB FACES & accessing other services.

  19. Positive Impacts • Families know they can: • Ask questions • Get information in Spanish • Visit their children’s school • Reach out to someone for help if there’s a problem • Learn how to communicate with their children • Talk to each other for emotional support • Figure out solutions to their problems • Have a better future for themselves & their children

  20. “Negative” Impacts • Families’ hopes being dashed by disrespectful school staff with low expectations • Information not available in their language from school • Resources not sufficient to address all needs

  21. Lessons Learned • Importance of: • Building trust • Asking questions; the Platinum Rule! • Being clear • Providing ongoing support • Building family leadership from within • Not assuming anything!

  22. Building Trust • Trust is not automatic; it must be earned and it can be lost. • Trust must be two-way: those who are not trusted, do not trust. • Trust leads to belief in each other and in a cause.

  23. Developing Trust & Being Clear • Be honest about the problems, the barriers, the potential negative consequences – as well as the potential benefit • What can you offer? What can’t you offer?

  24. Developing Trust • Be in it for the long haul. Don’t abandon ship after the first disappointment or failure. • Admit mistakes. • Ask for help!!! • LISTEN!!! • Acknowledge others’ contributions.

  25. Asking Questions • Golden Rule: Do unto others as you would have them do unto you • Platinum Rule: Do unto others as they would have you do unto them • How do you find out? Ask!

  26. Building Leadership • Building leadership requires: • Trust • Hope • Shared relationships • Honesty • Openness • Flexibility • Love

  27. Hope • Hope is not abstract. It is based on people’s hearts and souls, their experiences, and their belief that a better life is possible – and deserved.

  28. Building Leadership • Everyone’s contribution is respected. • Leadership is identified from within. • Internal leadership is publicly recognized, supported, & validated.

  29. Building Leadership • Encourage and support families to find their voice. • Be ready to hear what family members say. • Respect the passion of families for change.

  30. Looking to the Future…. • Before, the families were deaf & blind • Never heard anything from the school that they understood • Never saw their children’s school, services, or progress • Never spoke about their children or on their behalf • Had no hope for the future

  31. Looking to the Future…. • Now the families • Eyes have been opened • Ears are starting to hear • They are speaking about their children, about their lives, about their needs • See a future for their children • Have developed an extended family

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