Family Specialist Information Sheet
Name: Clara Berg______
Preferred Mailing Address: 57-33 224th Street______
Bayside ______
NY 11364______
E-Mail: ______
Phone #: 718-997-4855______
Mini Bio (please tell us about yourself and family):
I have been married to Jake more than half of my life, and we have 3 amazing grown up children who live close by on their own. Sheldon manages a Bank, Kenny is a farmer and Karen is a dietitian/nutritionist married to Yasha, and who gave to the family the gift of a beautiful addition called Cooper.
Our middle son Kenny was born very premature in 1980 and we call him our miracle child because he survived against all odds. The fact of being deaf-blind and having some other challenges doesn’t stop him from living a typical life working 5 days a week and living in his own apartment with support. He enjoys spending weekends with our family and he is the best travelling companion in the world.
Kenny is the reason of my serious involvement in the field of deaf-blindness where I started working as a volunteer to learn everything (or almost everything) I needed to know to help him develop and live a productive life like his siblings.
I have been the Family Specialist for the New York State Deaf-Blind Projects for the last 26 years, and one of my passions is to work with families who have a member with DB. I truly enjoy the interaction with parents trying to help them with any issues they might have and/or providing them with learning opportunities and resources.
I’m the President of the National Family Association for Deaf-Blind (NFADB), I’m in the Board of the New York Parent Association for Deaf-Blind (NYPADB), I’m a consultant for Perkins International, and very involved with other national and state projects dealing with deaf-blindness.
Current Position on your Deaf-Blind Project:
Family Specialist ______
Percentage of time you are paid to work on your State Deaf-Blind Project:
4 full days a week (without counting conference calls and mentoring parents in the evening’s hours J
Briefly describe what the family activities/ initiatives are in your state:
- Identification of children with deaf-blindness, concentration on EI systems
- Provision of TA to programs and families (individual and/or educational teams)
- Parent Leadership Training (in English and Spanish)
- Parent to Parent (in English and Spanish)
- SPARKLE Boot Camp
- Yearly Family Retreat Weekend
- Two Monthly National Conference Calls in Spanish for families who have a child with DB. One call for all the families, another one specific for CHARGE.
- Interdisciplinary Transition Team Initiatives (ITTI)
- Six educational webinars a year
What are your top 3 or 4 things that you feel most confident about with your skills that you would be willing to share with the group?
1) Training on advocacy skills
2) Training on Leadership skills
3) Facilitating Person Centered Planning
4) Facilitating Planning Alternatives for Tomorrow with Hope (PATH)
5) Communicating with families in Spanish, French, Portuguese or Italian
Are you a member of NFADB? _X_ YES (funding member) ___ NO
If no, would you like information? ___ YES ___ NO