Working Together to Support Families Presenters: Megan Cote, MS Ed - Initiative Lead for Early Identification and Referral & Family Engagement for the National Center on Deaf- Blindness - megan.cote@hknc.org Patti McGowan, Family Engagement Coordinator for PA Deaf-Blind Project and NFADB Secretary - pmcgowan@pattan.net Sheri Stanger, MA, Ed.M. - Director of Outreach for the CHARGE Syndrome Foundation - sheri@chargesyndrome.org Bring flyers for each organization!

Session Goals Provide knowledge of resources for families from NCDB, NFADB, and the CHARGE Syndrome Foundation Provide knowledge about how to join initiatives in these organizations Provide knowledge of how each organization connects families with similar needs and interests Describe how the organizations work together to assist families Tell them about the group activity at the end so they can be thinking as we present.

NFADB/CHARGE/NCDB: Working In Collaboration to Support Families National Family Association For Deaf-Blind (nfadb.org) Nonprofit organization empowering families to advocate for individuals who are deaf- blind Connects families through Facebook, webinars (in English and Spanish), a toll-free number, and a semiannual online course on the role of interveners in educational settings Charge Syndrome Foundation (chargesyndrome.org) Nonprofit organization that partners with families and professionals to improve the lives of people with CHARGE syndrome through outreach, education, and research Supports families via a director of outreach, webinars, a provider database, extensive online resources, and an international conference every two years National Deaf-Blind Technical Assistance Network (nationaldb.org) Funded by the U.S. Department of Education and consists of the National Center on Deaf-Blindness (NCDB) and a deaf-blind project in every state NCDB provides online information about all aspects of deaf-blindness The state projects offer personalized advice, information, and support to families We are all three separate entities - we are not in competition with one another and we enhance each other’s organizations by working together about how best to support families. Megan to make copies of this to disseminate of this chart

National Center on Deaf-Blindness A national technical assistance center funded by the U.S. Department of Education Works with state deaf-blind projects and national family organizations to improve quality of life for children who are deaf-blind and their families NCDB is not allowed to work on legislation because we are federally funded but since CHARGE and NFADB are non-profits, they can lobby.

What are the six NCDB Initiatives? Early Identification & Referral Family Engagement Interveners and Qualified Personnel Literacy National Child Count Transition Works with SDBPs to help improve identification & referral within 4 targeted systems: community programs, EHDI, Part C and Medical Family Engagement - support SDBPs (especially the FECs) in getting the best resources and support to families 3) IQP - Our goal is to create sustainable change at local, state, and national levels to ensure that all children who are deaf-blind are being served by personnel with expertise in deaf-blindness. 4) Literacy - promote the concept that literacy= communication and how best to make learning accessible for children with deaf-blindness 5) annually gather data on numbers of children, primary etiologies, age ranges 6) supports SDBPs in ensuring parents can plan for effective transitions & bring national organizations together into a CoP

The National Deaf-Blind Child Count Annually, each state deaf-blind project conducts a census of children and youth who are deaf-blind (birth through age 21). Information from all states is compiled and reported in the National Child Count of Children and Youth who are Deaf-Blind. There were a total of 9,635 individuals birth to 21 on the 2016 national count. To find out if your child/ student is eligible for services through your state deaf-blind project, contact the project directly. If they don’t know your child exists, they will have smaller numbers on their state count and they need that to provide direct service support.

December 2016 Deaf-Blind Child Count (AL – HI) State All Kids Ages birth - 5 Ages 6-11 Ages 12-21 Top Etiologies Alabama 178 22 48 108 Down syn., CMV, prematurity Alaska 17 6 11 Down syn., CHARGE, prematurity Arizona 211 29 75 107 CHARGE, prematurity, CMV Arkansas 156 16 64 76 Prematurity, hydrocephaly, CHARGE California 938 129 343 466 Colorado 135 39 38 58 CHARGE, Usher syn., CMV Connecticut 51 5 Prematurity, CHARGE, Asphyxia Delaware 73 34 Prematurity, CMV, Dandy Walker District of Columbia 20 7 CHARGE, Prematurity, Stickler Florida 556 67 207 282 Prematurity, CHARGE, Down syn. Georgia 280 74 94 112 Hawaii 65 10 24 31 Prematurity, meningitis, Stickler Just breeze over these and mention that they can read through detailed report on website

December 2016 Deaf-Blind Child Count (ID - MT) State All Kids Ages birth - 5 Ages 6-11 Ages 12-21 Top Etiologies Idaho 67 7 28 32 Prematurity, CHARGE, Down syn. Illinois 364 45 110 209 Prematurity, CHARGE, Usher Indiana 199 18 65 116 CHARGE, Prematurity, CMV Iowa 77 12 37 CHARGE, Prematurity, Usher Kansas 112 26 41 Prematurity, head injury, CHARGE Kentucky 111 10 60 Prematurity, CHARGE, CMV Louisiana 97 13 66 Prematurity, Usher, CHARGE Maine 40 5 17 CHARGE, Asphyxia, CMV Maryland 193 64 Massachusetts 244 30 87 127 CHARGE, Prematurity, Microcephaly Michigan 322 49 71 202 CHARGE, Prematurity, Asphyxia Minnesota 57 180 CHARGE, Prematurity, Stickler Mississippi 63 19 22 Prematurity, Hydrocephaly, CHARGE Missouri 223 76 62 85 CHARGE, Prematurity, Down syn. Montana 48 11 20 Usher, CMV, Prematurity Add bar at top

December 2016 Deaf-Blind Child Count (NE - PA) State All Kids Ages birth-5 Ages 6-11 Ages 12-21 Top Etiologies Nebraska 110 16 38 60 Prematurity, CHARGE, Meningitis Nevada 109 34 46 17 CHARGE, Prematurity, Down syn. New Hampshire 67 12 24 31 CMV, Microcephaly, Prematurity New Jersey 191 35 53 103 CHARGE, Prematurity, Usher New Mexico 129 43 41 45 Prematurity, Down syn., Asphyxia New York 331 33 94 204 North Carolina 287 99 145 Prematurity, CHARGE, Microcephaly North Dakota 10 14 Ohio 376 120 222 CHARGE, Prematurity, Microcephaly Oklahoma 151 49 69 Prematurity, CMV, Down syn. Oregon 86 19 22 CHARGE, CMV, Stickler Pacific Basin 54 3 18 Meningitis, Head injury, Down syn. Pennsylvania 453 169 143 141 Prematurity, CHARGE, Usher Add bar at top

December 2016 Deaf-Blind Child Count (PR - WY) State All Kids Ages birth - 5 Ages 6-11 Ages 12-21 Top Etiologies Puerto Rico 40 1 7 32 Prematurity, Hydrocephaly, head injury Rhode Island 39 6 9 24 Prematurity, Hydrocephaly, Asphyxia South Carolina 129 36 38 55 CHARGE, Prematurity, Goldenhar syn. South Dakota 33 19 Head injury, Prematurity, CHARGE Tennessee 250 83 75 92 Prematurity, CHARGE, head injury Texas 685 115 243 327 Prematurity, CHARGE, Down syn. Utah 132 45 31 56 Prematurity, Hydrocephaly, CHARGE Vermont 28 8 11 Asphyxia, Meningitis, CMV Virgin Islands 4 5 15 Prematurity, CHARGE Virginia 183 29 51 103 CHARGE, Prematurity, Usher Washington 233 52 64 117 Prematurity, CHARGE, Microcephaly West Virginia 93 12 35 46 Prematurity, Hydrocephaly, Microcephaly Wisconsin 144 26 44 74 CHARGE, Prematurity, CMV Wyoming 14 Down syn., CHARGE, Dandy Walker TOTAL 9,635 1,745 3,138 4,752 Add bar at top

On the NCDB website you can ... Create a profile and join initiatives of interest to you Learn about upcoming trainings Browse the Resource Library (includes an “Advanced Search” feature) Visit the “For Families” section and view “Families Matter Stories” Find contact information for the State Deaf- Blind Projects and other resources Follow us on Facebook and Twitter

How to Create a Profile on the NCDB site This will allow you to get notifications about things happening in initiatives that interest you and allow you to join in conversations.

How to do an Advanced Library Search This will be a great resource for you when you are trying to search for specific topical information. NCDB has an immense library of evidence-based products. This will connect you to articles, webinars, etc. AND there are CHARGE specific items in there.

How to Find Your State Deaf-Blind Project Deaf-Blind Projects by State On the main page of the NCDB website, the state that you are in will pop up with the contact info for the project director or coordinator. You can also go to “Connections” on the drop-down tool bar on the main page and look up the state project there which will include contact info for all staff on the SDBP including the Family Specialist.

State Deaf-Blind Project Services Opportunities for connections to other parents and resources in a state Local training and support for families & teams And much, much more! Explain that each project writes their own grant based on the needs of the families and service providers. But some of the things they may be able to do would be do home visits, school visits, etc. Mention that each state gets a different amount of money and this determines what can/ cannot be done. This all connects back to the national child count importance. The SDBPs, NCDB, CHARGE, NFADB all work together to support families. Many FECs work as board members for family organizations and they are liaisons for organizations.

OHOA Deaf-Blind Intervener Learning Modules A national resource designed to increase awareness, knowledge, and skills related to the process of intervention for students who are deaf-blind. Developed by National Center on Deaf-Blindness. For a list of partners and contributors visit: nationaldb.org/ohoamoodle/contributors.html For more information go to: moodle.nationaldb.org/ Open Hands Open Access Learning Modules, Free, Can be shared with anyone. Requires a username and password. Don’t lead to national certification. The OHOA Modules are a national resource designed to increase awareness, knowledge, and skills related to intervention for students who are deaf-blind. Originally intended as resource for intervener training programs, the modules very quickly also became recognized as an excellent resource for parents, educators, and other professionals.

National Family Association for Deaf-Blind (NFADB) Background The National Family Association for Deaf- Blind (NFADB) is a nonprofit organization that has served families of individuals who are deaf-blind since 1994. Originally started by and for families, NFADB’s membership is now extended to any person or organization that supports individuals and families who are deaf-blind Make sure that participants know what NFADB has things to offer that benefit them. Make sure to mention that Megan is a special advisor to NFADB and Sheri is a former board member and past president & Patti is Secretary.

National Family Association for Deaf-Blind (NFADB) Mission What We Believe: NFADB believes individuals who are deaf-blind are valued members of their community and should have the same opportunities and choices as others in the community Our Mission: NFADB exists to empower the voices of families of individuals who are deaf-blind and advocate for their unique needs. Make sure that participants know what NFADB has things to offer that benefit them. Make sure to mention that Megan is a special advisor to NFADB and Sheri is a former board member and past president & Patti is Secretary.

National Family Association for Deaf-Blind (NFADB) Objective Advocating for all persons who are deaf-blind of any age and cognitive ability Serving as a unified voice that supports and advocates for national policies Connecting people to information and resources Partnering with national organizations to build strong service systems National Community of Practice Bringing consumer and family voices to researchers and state/national discussions about deaf-blindness Providing opportunities for state parent groups to become NFADB Affiliates Make sure that participants know what NFADB has things to offer that benefit them. Make sure to mention that Megan is a special advisor to NFADB and Sheri is a former board member and past president & Patti is Secretary.

The NFADB Affiliate Network Have affiliates from the states that are there stand up and be introduced. And remember to mention Utah!

Purpose of NFADB Affiliates Create a stronger national network of families Conduit for information sharing Improve advocacy at the national, state and local levels Influence national trends and legislation Leadership development For more information, contact Edgenie Bellah, Affiliate Coordinator - edgenieb@gmail.com Make sure that participants know what NFADB has things to offer that benefit them. Make sure to mention that Megan is a special advisor to NFADB and Sheri is a former board member and past president & Patti is Secretary.

National Family Association for Deaf-Blind (NFADB) NFADB Resources, Trainings and Networking Opportunities: NFADB offers online study for families and individuals with deaf-blindness. Family to Family Community (F2F) Spanish webinars Upcoming Conferences Listserv e-Blast Mid-year and End of the year report Website - Family Stories, information and resources Make sure that participants know what NFADB has things to offer that benefit them. Make sure to mention that Megan is a special advisor to NFADB and Sheri is a former board member and past president & Patti is Secretary.

General membership opportunities for involvement with NFADB NFADB Action Plan Committees: Adult Life Committee: Jacqueline Izaguirre & Patti McGowan Affiliate Committee: Edgenie Bellah Fundraising Committee; Clara Berg Membership Committee: Patti McGowan Nominations Committee: Diana Griffen Organizational Promotion Committee: Carly Fredericks Policy Information and Education (PIE) Committee: Jacqueline Izaguirre Please visit website for contact information http://nfadb.org/who- we-are/board-of-directors/ Make sure that participants know what NFADB has things to offer that benefit them. Make sure to mention that Megan is a special advisor to NFADB and Sheri is a former board member and past president & Patti is Secretary.

National Family Association for Deaf-Blind (NFADB) Contact and Membership Information Phone: 1-800-255-0411 E-Mail: nfadbinfo@gmail.com Website: www.nfadb.org Facebook: https://www.facebook.com/NFADB/?fref=ts Address: NFADB PO Box 1667 Port Washington, NY 11050 follow us in Instagram & Twitter When you become a member of NFADB, you can get connected to their listserv where they regularly share info, resources and action alerts.

National Family Association For Deaf-Blind Are You A Member? What We Do Advocate for all persons who are deaf-blind of any age and cognitive ability Support all families of persons who are deaf-blind Connect families to information , resources and other families for support and learning Network and provide training for families and individuals who are deaf-blind Collaborate with other organizations to make sure the voices of consumers and families are at the state and national levels Social Media: http://www.nfadb.org Email: nfadbinfo@gmail.com Facebook: @NFADB Instagram: @NFADBORG Twitter: @NFADB

CHARGE Syndrome Foundation Vision: A Better World For People With CHARGE Syndrome Mission: To lead and partner to improve the lives of people with CHARGE Syndrome locally, nationally, and internationally through outreach, education, and research.

CHARGE Syndrome Foundation: Who We Are A 501(c)(3) charitable membership-based organization founded in 1993 Volunteer board of directors/advisors/scientific advisory board/clinical advisory board Provides support and outreach to families, individuals with CHARGE syndrome and professionals Provides information, promotes awareness and research

CHARGE Syndrome Foundation Director of Outreach Sheri Stanger A position to build capacity, increase collaboration and support, and inform and connect families. Contact Information: Toll Free Number – 855-5-CHARGE (855)524-2743 E-Mail – Sheri@chargesyndrome.org This is a paid part-time position that exists due to the fundraising efforts of the volunteer board of directors and our families so parents and professionals can have a constant point of contact within the foundation.

Number of Children with CHARGE Syndrome by Age   Birth-4 5-11 12-21 December 2016 Deaf-Blind Child Count Results 148 360 416 This is another intersection for our organizations. Numbers are important because they help drive policy, research, donations and product development.

Training offered by the CHARGE Syndrome Foundation 4 webinars/year International biennial conferences Lighthouse-Guild – bi-weekly tele- support groups around various eye conditions. Mention our most current webinar series on Interveners - and that all webinars are archived on the CHARGE website. There’s an opportunity to apply for financial support for Regional CHARGE events

Resources offered by the CHARGE Syndrome Foundation E-news Quarterly electronic newsletters Questions can be sent to info@ or an 800 # Director of Outreach with toll free # Listserv Facebook page for information Facebook group for discussion and support Parent-to-parent contact lists by state, province, country Provider Database State Liaison Project - https://www.chargesyndrome.org/for- families/get-support/ CA, DE, GA, KY, MI, MN, MO, NC, NH, NJ, NY, OH, PA, SC, TX Expand on the State Liaison Project - explain 4 basic duties of a liaison

CHARGE Syndrome Foundation Family Assistance EWRAP (Ethan Wolfe Recreational Assistance Program) – provides financial support to individuals with CHARGE for a wide variety of recreational activities and equipment Conference Scholarships

CHARGE Syndrome Foundation Website www.chargesyndrome.org/ Info about CHARGE syndrome Free Resources Foundation Information Research Information Upcoming Events/Conference Information Social Media Sites Search for Information

The CHARGE Syndrome Foundation Social Media Sites Facebook Page: https://www.facebook.com/chargesyndromefoundation Facebook Group: www.facebook.com/groups/chargesyndrome Twitter: twitter.com/chargesyndrome Instagram: https://www.instagram.com/charge_syndrome_foundation/ YouTube: https://www.youtube.com/channel/UCB0aG8YsCswrtvgbPuhENEw

Volunteer Opportunities Committee Names and Leads: Communications: Joanne Lent Conference: Neal Stanger and Karin Dagley Family Engagement: Minnie Lambert Fundraising: David Wolfe and Deanna Steinhauser Resources Development: Julie Brandrup and Amrit Mehta Please visit website for contact information: https://www.chargesyndrome.org/our-role-impact/about-the- foundation/our-executive-board-advisors/ Explain briefly what each committee does/ is working on

CHARGE Syndrome Foundation Contact & Membership Information Toll Free #: 800-442-7604 Email: info@chargesyndrome.org Website: CHARGE Syndrome Website Director of Outreach: 855-5CHARGE (855-524-2743) sheri@chargesyndrome.org Mailing Address: 318 Half Day Road #305 Buffalo Grove, IL 60089

Other Family Resources (1 of 3) Family2Family Connections – Online groups that bring family members together across state lines to get to know one another, share information and resources, & offer support. Interested? Contact Carol Darrah at cdarrah@uga.edu State and Local Parent Centers - http://www.parentcenterhub.org/

Other Family Resources (2 of 3) iCanConnect – Federally-funded program that provides free distance communication technology to people with combined vision and hearing loss (http://www.icanconnect.org) Helen Keller National Center for Deaf-Blind Youths & Adults – Provides individualized residential training for teens & adults on their campus in New York and information about local resources and services via regional representatives throughout the country (https://www.helenkeller.org/hknc)

Other Family Resources (3 of 3) Monthly tele-support call for Spanish speaking families. Contact Myrna Medina if interested myrnam@sfsu.edu National Coalition on Deafblindness provides information and advocacy to policy makers, fiscal agents, educational professionals and community leaders on behalf of children and youth who are deaf-blind. (thedbcoalition.org)

Questions? Thanks so much for joining us today! We will have 2 handouts - one with the graphic of NFADB/ NCDB and CHARGE and then one with opportunities to volunteer with NFADB and CHARGE We have exhibitor booths and info in the back of the room. Please come see us! CHARGE - document hand out with ways to get involved - committees/state liaison project/social media sites