Public Policy Advocacy for Social Change

1
Juntos Podemos!Together We Can! Effective
Strategies to Support Spanish-Speaking Families
of Children with Deaf-Blindness/Hearing Visual
Impairments
2
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

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

• Parents had not thought of or considered planning
  for their childrens future
• Many parents were depressed werent taking care
  of themselves
• Parents were isolated even from informal social
  support networks

13
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

14
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

15
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

16
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

17
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

18
Action Plan Summary

• Families learned about
• Parent rights tips on how to advocate _at_ IEP
  meetings, with doctors, etc.
• Assistive technologies resources to access them

19
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

20
Connecting Families with Other Families

• Weekend mini-conferences/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

21
Action Plan Summary

• Other activities
• Home visits
• Attendance at IEP meetings
• Ongoing communication
• Connecting families to other service providers
  to each other

22
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

23
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

24
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

25
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

26
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!

27
Lessons Learned

• Importance of
• Building trust
• Asking questions the Platinum Rule!
• Being clear
• Providing ongoing support
• Building family leadership from within
• Not assuming anything!

28
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.

29
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?

30
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.

31
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!

32
Building Leadership

• Building leadership requires
• Trust
• Hope
• Shared relationships
• Honesty
• Openness
• Flexibility
• Love

33
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.

34
Building Leadership

• Everyones contribution is respected.
• Leadership is identified from within.
• Internal leadership is publicly recognized,
  supported, validated.

35
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.

36
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

37
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

38
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

39
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