Empowering Parents to Influence & Lead

Transcription

1 Empowering Parents to Influence & Lead

2 Vicki Hunting Parent H&V HQ Staff Board Member Iowa H&V Deshonda Washington Parent Executive Director Georgia H&V GBYS Parent Guide, Georgia H&V

3 Mission Hands & Voices is a parent-driven organization that supports families with children who are deaf or hard of hearing without bias around communication modes or methodology. Vision We envision a world where children who are deaf and hard of hearing have every opportunity to achieve their full potential. Motto What works for your child is what makes the choice right

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5 We believe our children have a fundamental human right to communication, regardless of their mode or method of communication We get meaningfully involved in early hearing detection and intervention programs, educational advocacy, and other systems to improve them from an end-user perspective through highly trained, knowledgeable parents We exist to help our children/students reach their highest potential We believe Parent-to-Parent Support is a cornerstone for families finding their way We promote the life experiences and talents of adults who are Deaf and Hard of Hearing to help families ensure success for their own children who are d/hh

6 Kids with mild, moderate, severe, profound, unilateral, conductive, auditory neuropathy, congenital, acquired, or age progressive hearing loss or deafness Kids who speak, kids who sign, kids who do both, kids who cue, kids who are aided or not aided, and/or kids who have cochlear implant The families of these children and the professionals who work with them in all capacities

7 We Are Hands & Voices. Supporting Families Without Bias. Is This a Deaf Thing?. A Parents Wish List for Professionals. Special Education Law & DHH Students. Advanced Advocacy for DHH. Beginning With the End in Mind. What Do I Say When. The Art of Story. Communication Conflict Management. SIBLINGS. Encountering Emotions. Communication Considerations & Decision Making. Methods, Modes & Matches. Parents As Allies. Deaf Cultural Sensitivity & Etiquette. Spanish Speaking Family Support. Parents at the Podium. DHH CASE LAW. The Turbo IEP. What Parents Need to Know About Recommended Practices in Deaf Ed. The Deaf/HH Child s Bill of Rights. Headin Em Off at the Impasse. A is for Access: How to Provide Full & Effective Communication Access for DHH Students. Parents from Hell & Other Advocacy Myths, Chapter Management, FUNDRAISING, and more!

8 Tired of the war... A group of parents/professional in CO in 1996 Created support for families with kids birth through high school Autonomy at each chapter level while maintaining a vision for a shared enterprise Requests for educational advocacy support started rolling in PARENTS NEED(ED) TRAINING

9 HELP I was told to get a follow up screen from the hospital, but there are no appointments available for 3 months. My early intervention provider is telling me if we don t choose as our communication option, our child will not succeed they tell me my son is not eligible for special ed. Because he s doing too well? they ve assigned a new interpreter to my daughter who uses ASL, and the terp uses SEE? my school just assigned an SLP who has never worked with deaf kids, and my child just got a CI

10 HELP the school told me my daughter has to go the center based program can t go to the center based program has to go to the school for the deaf never told me about the school for the deaf, has to go to the neighborhood school due to LRE I ve been assigned a service coordinator in Part C who knows nothing about deafness. my child has never learned any self-advocacy tools to get along in the real world. my child can t find a job. my child is getting good grades but is really lonely and has no friends my child is being bullied.

11 10-15 years ago, families had to personally attend workshops to get information or to find support from other families Today, families have access to information without leaving their home Families are far more complicated and heavily scheduled Our charge is to make sure that parents get accurate, comprehensive information/support for all choices in as many ways as possible source: Lindow Davies, C. MN H&V

12 Non Non-modality specific o One-on-one, informal, formal, group events In different formats to accommodate the needs of today s families

13 Passive Communication Newsletters Mass Alerts Web Sites Fact Sheets Roadmaps Parent Welcome Letters New Parent Packets Resource guides Group Interactions Social Events Educational Workshops Conferences Webinars Retreats Regional Family Activities Social Opps FaceBook Anonymous Interactions Chat Rooms Bulletin Boards List serves Blogs H&V YouTube One-on on-one one Communication Phone communication communication Facilitated phone/ contact between parents In person meetings copyright (c) Hands & Voices 2012

14 Point of contact for: DNP families through GBYS trained Parent Guides Newly Identified Families and on-going mentoring from Guide By Your Side Ongoing parent to parent support & DHH adult to parent support Parent & Professional Training Curriculums and On-Site Workshops ASTra TM (Advocacy Support and Training) Program: Training advocates to support families

15 Research Partnerships with Universities and Agencies Local/National/International Parent/Professional Networks Parent Advocacy & Education Seminars Newspaper/Website/Resource Guide/Funding Toolkit/Videos/DVDs/books The O.U.R. Project o Monthly calls o Bright Spots o Training sessions within GBYS programs, at conferences, at our own leadership conference, etc o Safety attachment o Embedded into GBYS and ASTra

16 Social Events for Families Statewide Family Camps, Picnics, Play dates, Mom s Night Inn, Dad s Night Out, Easter Egg Hunts, Holiday Parties, (with signing and speaking Santa), Literacy Night, Halloween Carving, Family Camping Trips, Spanish Speaking Fiesta with Piñata and traditional dancing, Newly ID Picnics, Pen-Pal Programs, Chucky Cheese Night out, Coffee night, Children s Theater, Family Conferences, etc

17 Credibility: Parents for parents Use-ability: Offering different forums for support (phone, newsletter, workshops, meetings, conferences, informal, social) Applicability: Choosing topics where the rubber meets the road Dependability: Consistency Realistically: Funding Replicability: TRAINED parents in every chapter

18 1 Parent = A fruitcake 2 parents = A fruitcake and a friend 3 parents = Troublemakers 5 parents = Let s have a meeting 10 parents = We d better listen 25 parents = Our dear friends 50 parents = A powerful organization From the Parent Leadership Associates

19 We make leaders o Managing organizations and people o Annual H&V Leadership Conference We use our resources o The Wisdom Among Us o The body of knowledge out there We have high standards yet realistic to our lives

20 Leadership Development Chapter leaders, GBYS coordinators, ASTra Advocates, GBYS Guides Initial training, ongoing training, leveled recognition, advanced training Established Standards Policies and guidelines for consistency across programs Oversight from HQ with implementation at chapter level

21 Vision, mission, and philosophical alignment Train the trainer model Individual stories and experiences Initial requirements On going activities of professional development Levels of recognition Evaluative measures Chapter level leadership; administrative/day-to-day operations

22 Mentoring families with newly identified D/HH babies Advocating for individual student or full systemic improvement Providing thought leadership to program development and implementation Serving as parent consultants to programs and agencies Training professionals on sensitivity and awareness of family issues Providing end-user quality control oversight to services and systems

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24 Parents reporting social networks with other parents of children who are deaf were associated with less isolation, greater acceptance of their child, and improved interactional responsivity. (Hintermaier, M., 2000)

25 95% of all children who are deaf or hard of hearing are born into hearing families ( Mitchell & Karchmer 2004) 90% of these families have no background in deafness or connections to the deaf community (Center for Demographic Studies 1984) The key to a successful integration of hearing loss into a family is the degree to which parents are able to integrate hearing loss into their lives (D. Luterman, 2006)

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27 Getting to Success Through Parent Involvement

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29 Parent led, centered, involved, directed For their own child Parent-to-Parent For each other Parent participation through advocacy In the System

30 Parent involvement/leadership provides: Unique perspective of a vested stakeholder Motivated and personal commitment to improvement of the system Lifelong case manager: Understands how different systems/seasons of life relate to each other Systems that are appropriate for and acceptable to families The system is relevant to the actual diverse life experiences of families Better outcomes for kids Parent tested

31 Early Identification & Intervention Systems (EHDI & EI) Educational Systems Research Projects Medical/Health Systems Legislative Involvement: UNHS, DCBR, Hearing Aid Legislation, American Sign Language as Foreign Language giving voice to constituency of minors; putting a face on the issues Professional Training Systems Pre-service and In-Service

32 Strategic Leadership and Planning Conference Calls Annual H&V Leadership Conference Resources: Grant Templates, articles, presentation and workshop support etc. Common Culture The Hands & Voices Guide By Your Side and ASTra Programs Database Program Board Development Strategies

33 Website that links parent inquiries to local contacts in their own state Simultaneous top-down/bottom up agenda leverage H&V branding and credibility Network for instant info, feedback and advisement across North America High-quality, recognizable products and services Access to vast vetted resources Parent-to-Parent rare connections Representation at the national DHHA National issues awareness to state chapters Program replicability Strength in numbers!

34 Chapter Listservs (yahoo and others) are utilized to get the word out on legislation/events/conversations Start-up support & mentoring including non-profit guidance, SOPs, etc Quarterly issues of The Hands & Voices Communicator Newspaper provide cutting edge information quality-controlled image & exposure trusted credible sources on-going mechanism for communication to locales network & issues reach Website start up tech support & events calendar

35 Headquarters Staff 2014

36 First they ignore you, then they laugh at you, then they fight you, then you win. Mahatma Ghandi

37 In the end, it s not just about the choices we made for our children, but how we fostered their ability to make the right choices for themselves, and then honored their choices. - Seaver, Hands & Voices

38 Janet DesGeorges Executive Director PO Box 3093, Boulder, CO toll free