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