Juntos Podemos! Together We Can!

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

2. Pilot Project Partners • Collaborating Partners • New Jersey PTI ~ NJ SPAN • New Jersey DB Project ~ DB FACES • National Consortium on Deaf-Blindness (NCDB)

3. Pilot Project’s Targeted Outcomes • To pilot a focus group process to learn how Spanish speaking families of children and youth with deaf-blindness can best access the information and support they need • To develop customized TA and dissemination strategies for families from diverse cultural and racial backgrounds to access the information and support they need • To share the results of the collaborative activities with other state and national TA & D projects

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

5. 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

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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

12. 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

13. 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

14. Parents’ Feelings • Parents had not thought of or considered planning for their children’s future • Many parents were depressed & weren’t taking care of themselves • Parents were isolated even from informal social support networks

15. 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

16. 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

17. 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

18. 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

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

20. Action Plan Summary • Families learned about: • Parent rights & tips on how to advocate @ IEP meetings, with doctors, etc. • Assistive technologies & resources to access them

21. Conferences Provided Learning Opportunities • Facilitating transportation for families to attend learning events created opportunities for families to learn about different resources that can help them & their children become more independent • Asking questions & interacting with panel members challenged families & gave them hope

22. Connecting Families with Other Families • Weekend mini-conferences and trainings included extensive opportunities to gain new educational information, network with other parents, & connect with professionals in the field of deafness, blindness, visual & hearing impairments

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

24. Calendar of Events • January, 2007:Changes in IDEA & State Code workshop • February 10, 2007:Workshop & Support Group meeting: • Introduction to DB FACES Services & El Club de Padres services • March 30-31, 2007:SPAN Conference • Scholarships, transportation, child care • Workshops on rights to language access; NCLB & IDEA; nutrition • April 21, 2007:DB FACES workshop on map to communication & how to communicate effectively with your child • April 21, 2007: Participation in NJ Department of Children & Families Forum on Child Welfare/DYFS & Case Practice Model, collaborating with families, cultural competence • April 28, 2007:Participation inNYMAC Genetics Consortiumforum/focus group • May, 2007: Mother’s Day luncheon

25. Calendar of Events • May 16, 2007:Presented at National Consortium on Deaf-Blindness Topical Workshop • May 19, 2007: Family Learning Conference for families of children with deafness/hearing loss • Assistive technology, other resources available for families • May 31, 2007: Educating Students with Dignity Workshop • Positive discipline/positive behavior supports, avoiding aversives & restraints • June, 2007: Picnic! • June, 2007:Parent to Parent Support Parent Orientation • June 16, 2007: Presented at National OSEP Project Directors’ Conf • July, 2007: Community health fair • Parent volunteers helped to staff a SPAN table • July, 2007:Winning Angels Support Group Sweet 16 Party

26. Calendar of Events • August, 2007: DB FACES training on signing; swimming & lunch for the children • September 8, 2007: Understanding your child’s audiological exam • September 28, 2007: Completion of Parent to Parent orientation, introduction of Yolanda Quintero, Spanish Parent to Parent Coordinator; presented each family with signing CDs and DB t-shirts from the picnic • October, 2007: Workshop with NJ Immigrant Policy Networkon: • NCLB, Bilingual Education Code, Rights to Language Access • Parents signed letters of complaint to state department of education • October 18, 2007: Mayor’s Advisory Forum on DDD • October 20, 2007:Baby shower! • November 2, 2007: Parents Anonymous Conf on Parent Leadership • Parent volunteers presented on panel at PA-NJ conference

27. Calendar of Events • November 17, 2007: Commission for the Blind presentation& speech by Miguel Lopez, a student with DB, on his life journey • December, 2007: Trained families on Traducelo Ahora translation program, allowing them to access websites in Spanish and send emails in Spanish/English to professionals • December, 2007: Governor’s Blue Ribbon Panel on Immigrant Affairs Public Hearing • December 23, 2007: Holiday Party with Winning Angels! • February 1, 2008: National Alliance for Parent Centers Conference presentation on project and outcomes • February, 2008: Holiday Party with Winning Angels! • March 1, 2008: SPAN Conference • Parents will be provided scholarships, transportation, childcare • All workshops with simultaneous translation, all material translated into Spanish

28. 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

29. 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

30. Positive Impacts • Friendships formed • Having fun with each other and with their children • Learning how to use Traducelo Ahora to access websites and communicate with English-speaking professionals

31. “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

32. Lessons Learned • Parenting a child with a multi-sensory impairment frequently causes isolation, confusion & fear • With a language barrier, little communication occurs which makes the family even more isolated • Communication requires an investment of time & effort but it can be done!

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

34. 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.

35. 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?

36. 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.

37. 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!

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

39. 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.

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

41. 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.

42. 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

43. 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

44. Looking to the Future…. • Families are a community not only with each other but with other Latino families of children with a wide range of special needs • Families are enjoying their children & celebrating their accomplishments

45. Looking to the Future…. • Families are providing emotional support to other families (Parent to Parent)… • connecting new families to resources (PTI, Family Voices), & • sharing their experiences with policymakers

46. So…what next? • All materials developed in this pilot project will be shared with state deaf-blind projects and state PTIs • www.nationaldb.org • CDs of materials available upon request • Support from NCDB to implement this strategy with underserved families in your state

47. Key Questions to AskBefore You Begin • Have you identified anunderserved population in your state? • Are you ready to develop a partnership with your state PTI or other parent organization? • Do you have the resources to follow through with providing TA to these families ?

48. Helpful Resources • Parent Training & Information Center • Every state has at least one PTI funded by US Dept of Education to provide early intervention & special education information & training to parents of infants, toddlers, children & youth with disabilities birth to 26 • Go to www.taalliance.org/ PTIs.htm for your PTI & Community Parent Resource Center

49. Helpful Resources • Family Voices • Every state has at least one FV chapter or Network member to help families advocate for effective health care & other services for children with special healthcare needs • Go to http://www.familyvoices.org/states.php to locate the Family Voices contact in your state

50. Helpful Resources • Family to Family Health Information Resource Center • There are F2F Centers in 30 states • Go to http://www.familyvoices.org/info/ncfpp/f2fhic.php to find the one nearest you • The Family Opportunity Act authorizes a F2F in every state within 3 years