Juntos Podemos! Together We Can!

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 didnt 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 childrens 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 childrens 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 childrens school
• Reach out to someone for help if theres 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 cant you offer?

24
Developing Trust

• Be in it for the long haul. Dont 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 peoples
  hearts and souls, their experiences, and their
  belief that a better life is possible and
  deserved.

28
Building Leadership

• Everyones 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 childrens 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