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

– Programs serving children with deafness/hearing loss or blindness/visual impairment

– CBOs serving Latino families

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

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

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

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

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

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

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

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

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

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

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

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

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

Action Plan Summary

• Monthly activities– Support group– Workshops on

critical issues– Parent to Parent

orientation– Attendance at

SPAN conference– Participation in

other focus groups

Action Plan Summary

• Other activities– Home visits– Attendance at IEP

meetings– Ongoing

communication– Connecting

families to other service providers & to each other

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.

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

“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

Lessons Learned

• Importance of:– Building trust– Asking questions; the

Platinum Rule!– Being clear– Providing ongoing

support– Building family

leadership from within– Not assuming

anything!

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.

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?

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.

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!

Building Leadership

• Building leadership requires:– Trust– Hope– Shared

relationships– Honesty– Openness– Flexibility– Love

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.

Building Leadership

• Everyone’s contribution is respected.

• Leadership is identified from within.

• Internal leadership is publicly recognized, supported, & validated.

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.

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

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