WORKING TOGETHER TO SUPPORT FAMILIES Presenters Megan Cote

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 Mc. Gowan, 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

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

NFADB/CHARGE/NCDB: Working In Collaboration to Support Families

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

What are the six NCDB Initiatives? ■ Early Identification & Referral ■ Family Engagement ■ Interveners and Qualified Personnel ■ Literacy ■ National Child Count ■ Transition

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.

December 2016 Deaf-Blind Child Count (AL – HI) All Kids Ages birth 5 Ages 6 -11 Ages 12 -21 Alabama 178 22 48 108 Down syn. , CMV, prematurity Alaska 17 0 6 11 Down syn. , CHARGE, prematurity Arizona 211 29 75 107 Arkansas 156 16 64 76 CHARGE, prematurity, CMV Prematurity, hydrocephaly, CHARGE California 938 129 343 466 Down syn. , CHARGE, prematurity Colorado 135 39 38 58 CHARGE, Usher syn. , CMV Connecticut 51 5 17 29 Prematurity, CHARGE, Asphyxia Delaware District of Columbia 73 17 22 34 Prematurity, CMV, Dandy Walker 20 7 7 6 CHARGE, Prematurity, Stickler Florida 556 67 207 282 Prematurity, CHARGE, Down syn. Georgia 280 74 94 112 Prematurity, CHARGE, Asphyxia Hawaii 65 10 24 31 Prematurity, meningitis, Stickler State Top Etiologies

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

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 CHARGE, Prematurity, Usher North Carolina 287 45 99 145 Prematurity, CHARGE, Microcephaly North Dakota 34 10 10 14 CHARGE, Prematurity, Usher Ohio 376 34 120 222 CHARGE, Prematurity, Microcephaly Oklahoma 151 33 49 69 Prematurity, CMV, Down syn. Oregon 86 19 22 45 CHARGE, CMV, Stickler Pacific Basin 54 3 18 33 Meningitis, Head injury, Down syn. Pennsylvania 453 169 143 141 Prematurity, CHARGE, Usher

December 2016 Deaf-Blind Child Count (PR - WY) All Kids Ages birth 5 Ages 6 -11 Ages 12 -21 Puerto Rico 40 1 7 32 Rhode Island 39 6 9 24 South Carolina 129 36 38 55 Prematurity, Hydrocephaly, Asphyxia CHARGE, Prematurity, Goldenhar syn. South Dakota 33 7 7 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 9 8 11 Asphyxia, Meningitis, CMV Virgin Islands 24 4 5 15 Prematurity, CHARGE Virginia 183 29 51 103 CHARGE, Prematurity, Usher Washington 233 52 64 117 Prematurity, CHARGE, Microcephaly State Top Etiologies Prematurity, Hydrocephaly, head injury West Virginia 93 12 35 46 Prematurity, Hydrocephaly, Microcephaly Wisconsin 144 26 44 74 CHARGE, Prematurity, CMV Wyoming 38 9 14 15 Down syn. , CHARGE, Dandy Walker 9, 635 1, 745 3, 138 4, 752 TOTAL Prematurity, CHARGE, Down syn.

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

How to do an Advanced Library Search

How to Find Your State Deaf. Blind Project Deaf-Blind Projects by State

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!

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/

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

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 advocate for their unique needs.

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

The NFADB Affiliate Network

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

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 (F 2 F) ■ Spanish webinars ■ Upcoming Conferences ■ Listserv ■ e-Blast ■ Mid-year and End of the year report ■ Website - Family Stories, information and resources

General membership opportunities for involvement with NFADB ■ NFADB Action Plan Committees: ■ Adult Life Committee: Jacqueline Izaguirre & Patti Mc. Gowan ■ Affiliate Committee: Edgenie Bellah ■ Fundraising Committee; Clara Berg ■ Membership Committee: Patti Mc. Gowan ■ 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/whowe-are/board-of-directors/

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

National Family Association For Deaf-Blind Are You A Member?

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

Number of Children with CHARGE Syndrome by Age December 2016 Deaf. Blind Child Count Results Birth-4 5 -11 12 -21 148 360 416

Training offered by the CHARGE Syndrome Foundation ■ 4 webinars/year ■ International biennial conferences ■ Lighthouse-Guild – bi-weekly telesupport groups around various eye conditions.

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/forfamilies/get-support/

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/ You. Tube: https: //www. youtube. com/channel/UCB 0 a. G 8 Ys. Cswrtvgb. Puh. ENEw

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/

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

Other Family Resources (1 of 3) ■ Family 2 Family 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) ■ i. Can. Connect – 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!