1. 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 -
Patti McGowan, Family Engagement Coordinator for PA Deaf-Blind Project and NFADB Secretary -
Sheri Stanger, MA, Ed.M. - Director of Outreach for the CHARGE Syndrome Foundation -
Bring flyers for each organization!

2. 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.

3. 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

4. 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.

5. 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

6. 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.

7. 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

8. 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

9. 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

10. 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

11. 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

12. 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.

13. 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.

14. 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.

15. 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.

16. 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.

17. 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.

18. 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.

19. 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.

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

21. 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 -
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.

22. 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.

23. 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 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.

24. National Family Association for Deaf-Blind (NFADB) Contact and Membership Information
Phone:
Website:
Facebook:
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.

25. 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:

26. 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.

27. 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

28. 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 – CHARGE (855) –
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.

29. 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.

30. 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

31. Resources offered by the CHARGE Syndrome Foundation
E-news
Quarterly electronic newsletters
Questions can be sent to 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 - 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

32. 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

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

34. The CHARGE Syndrome Foundation Social Media Sites
Facebook Page: Facebook Group: Twitter: twitter.com/chargesyndrome Instagram: YouTube:

35. 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: foundation/our-executive-board-advisors/
Explain briefly what each committee does/ is working on

36. CHARGE Syndrome Foundation Contact & Membership Information
Toll Free #:
Website: CHARGE Syndrome Website
Director of Outreach: 855-5CHARGE
( )
Mailing Address: 318 Half Day Road #305 Buffalo Grove, IL 60089

37. 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
State and Local Parent Centers -

38. Other Family Resources (2 of 3)
iCanConnect – Federally-funded program that provides free distance communication technology to people with combined vision and hearing loss (
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 (

39. Other Family Resources (3 of 3)
Monthly tele-support call for Spanish speaking families. Contact Myrna Medina if interested
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)

40. 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