juntos podemos! together we can! effective strategies to support spanish-speaking families of...
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Juntos Podemos!Together We Can!
Effective Strategies to Support Spanish-Speaking Families of Children with Deaf-Blindness/Hearing &
Visual Impairments
Pilot Project Partners
• Collaborating Partners– New Jersey PTI ~ NJ SPAN– New Jersey DB Project ~ DB FACES– National Consortium on Deaf-Blindness (NCDB)
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
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
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
• 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
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 & other conferences
– Participation in other focus groups
Action Plan Summary
• Families learned about:– Parent rights & tips on how to advocate @ IEP meetings, with doctors, etc.
– Assistive technologies & resources to access them
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
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
Action Plan Summary
• Other activities– Home visits
– Attendance at IEP meetings
– Ongoing communication
– Connecting families to other service providers & to each other
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 in NYMAC Genetics Consortium forum/focus group
• May, 2007: Mother’s Day luncheon
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
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 Network on:– 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
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
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
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
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
“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
• 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!
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
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
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
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
Key Questions to AskBefore You Begin
• Have you identified an underserved 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 ?
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
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
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
Helpful Resources
• Parent to Parent– Almost every state has a statewide parent to parent program connecting families for emotional support & info on resources
– Go to http://www.p2pusa.org to find your P2P program
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