Janet DesGeorgesExecutive Director

Hands & Voices Headquarters

U.S./Russian Partnership: Supporting Families with Deaf and Hard of Hearing Children

A taste of Hands & Voices….

1 Chapter – 1997 50 Chapters – 201522 Guide By Your Side programs – 20152 ASTra Programs (education)

Hands & Voices Headquarters Staff - 2015

www.handsandvoices.org

INTERNATIONAL - Tier One: Collaboration and support that does not require financial support and determined by availability of staff time and capacity Tier Two: International collaboration and support that includes funding and specific deliverables Tier Three: Start –up of International Hands & Voices Chapter through formalized process

Elements of Success in U.S.A. (Hands & Voices)

– Parent-to-Parent support• Uncompromised commitment to parent’s unique needs

– Parent involvement • leading to improved medical, educational, and

employment outcomes

– Parent leadership/Collaboration with professionals • Equality of partnership

The Essential Question - Does “Parent Involvement/Support” cross over from country to country?

• In a literature review of 39 peer-reviewed articles published from 2000 to 2014, Henderson, Johnson and Moodie (2014) described the importance of parent-to-parent support in helping to guide parents on how to advocate on behalf of their child and access special education services: “Peer parental support systems boost parental morale and confidence when looking toward the future point of transition. Parents are better positioned to support the goals chosen by the child through meaningful collaboration” (p. 7).

The Project

• U.S. Department of State, Russia Peer-to-Peer Dialogue Program with U.S.-based Hands & Voices and Russian Federation-based St. Petersburg Early Intervention Institute (EII), to promote parent collaboration and leadership.

Parent to Parent Dialogue Program • Direct exchange of knowledge and relationship

building at two in-person meetings (one in U.S., one in Russia) • Mutual mentoring “Mutual Mentoring” distinguishes itself from

the traditional model of ‘top-down mentoring’ in that the relationship is a non-hierarchical, collaborative exchange in which no single person is required or expected to possess all the expertise and information• U.S. Trip – Russian Team members attended the 2014 H&V

Leadership Conference and a full day meeting with U.S. team members

• Russian Trip – U.S. team members hold a parent workshop for families in St. Petersburg and attend/host a parent panel at a professional conference and full day planning meeting with team.

WEBINARS

Exchange of knowledge and experiences for parents and professionals through Web-based, Visually accessible and captioned webinars (5 over the course of the project) including:• An ‘open’ presentation to families from US team to Russia

at a parent support workshop held in St. Petersburg• A couple of closed team session on strategies for starting a

parent support organization, discussing translation of materials, parent partnerships with professionals

• A closed team meeting just for the deaf participants on the team

• An open meeting for U.S. participants of a meeting presented by our Russian team members to us. (family journey stories)

Translation of materials (over 50 so far)

• Поддержка вашей семьи (Supporting your Family)• Поддержка вашей семьи II (Supporting your Family II)• Исследуем возможности (Exploring the Opportunity)• Декларация прав родителей (Parents Bill of Rights)• Принятие как процесс (Acceptance as a Process)• Принятие (Acceptance)• Стратегии приспособления (Coping Strategies)• Исследуем возможности (Exploring the Possibilities)• Влияние потери слуха на семью (Impact of Hearing Loss Within the

Family)• Мифы о глухоте (Myths about Deafness)• Что родителям и работникам разных служб помощи следует знать о

братьях и сестрах (What Siblings would like Parents and Service Providers to Know)– …..AND MORE IN THE AREAS OF TECHNOLOGY, EDUCATION, COMMUNICATION

CONSIDERATIONS, QUESTIONS TO ASK YOUR AUDIOLOGIST ETC…

Lessons Learned

• Yes, we can figure out our Language/Identity Differences:

English, Russian, American Sign Language, Russian Sign Language, Deaf, (oral and signing) and Hearing, Parents and Professionals

Our US and Russian Deaf team members with interpreter

at the Pavlov Institute of Physiology, Russian Academy of Sciences. St. Petersburg

Lessons learned

• Yes, we can figure out ‘cohesion’ and team building over long distances– In person encounters– Webinar meetings– Emails/What’s app/Facebook….

• Yes, we can create a relationship that is not hierarchal but an EQUALITY of exchange and learn from one another.– Between countries– Parent driven and yet professionally collaborative

Lessons Learned

• Challenges faced– Equity of Partnership between parents and

professionals has a ‘learning curve’ in other countries (but it can be done!)

• The power of one believer• The power of the empowered parent

– Level of Funding/Sustainability• This project had a really healthy budget• Sustainability opportunity for another year

Results of the Parent to Parent Dialogue Program • Parent to Parent Support Groups learn from each other’s models and

grow in strength.• “I Hear” - organization founded by mothers of Deaf/HH children in

Russia including parents who are Deaf and those who are Hearing in collaboration with St. Petersburg City Family Centered Early Intervention Program for Deaf and Hard of Hearing Children.

• Empowered parents make inroads/partnerships with professionals in Russia.

• H&V leadership learn lessons about international partnering – we can overcome our U.S. centric view on things…

• Russian parents (deaf and hearing) make important connections with one another for the first time

• Quote from Alla – “the biggest thing we have learned from H&V is deaf and hearing parents working together”

It Takes a Village… (or at the very least a bunch of parents!!)

“I am a part of all that I have met.”-Alfred Tennyson

We don't accomplish anything in this world alone ... and whatever happens is the result of the

whole tapestry of one's life and all the weavings of individual threads from one to

another that creates something. -Sandra Day O-Connor

Special thanks to our Project Director on this Grant – Molly Martzke (H&V HQ)

copyright (c) Hands & Voices 2015

Hands & Voices

Janet DesGeorges, Executive DirectorPO Box 3093Boulder, CO 80307303-492-6283janet@handsandvoices.org

Other H&V websites:

www.deafed.netwww.ndepnow.org

www.handsandvoices.org