Position papers written from a family member's perspective.

Please feel free to print and share when advocating for your loved one's best life.

• Qualified Personn
• Interveners
  
• Teachers of Students who are Deaf-Blind
  
• Support Service Provider or CoNavigator
• DeafBlind Definition

The Cogswell-Macy Act (CMA) is gaining some ground, but we still need your help! If you have a X(Twitter) account, like @nfadb and the new @CogswellMacyAct X(Twitter) page!

1. Find your legislators here

2. Get their X(twitter) handle here 

3. Follow @nfadb 

4. Retweet CMA tweets from @nfadb to your legislators

5. Tag @nfadb and hashtag #CogswellMacyAct

6. Organize your own X(Twitter) Blast within your state or organization.

7. Use any of the tools from the tool kit here

Purpose

The Family Advocacy Training & Education (FATE) Project trains family members who already possess leadership skills to advocate on issues important to the Deaf-Blind field and community.  The family members then use their newly honed advocacy skills to educate legislators on the needs of individuals who are Deaf-Blind and their families.

In our pilot year (2021), NFADB with the support and guidance from the DeafBlind Coalition and the National Center on Deafblindness worked all summer and early fall to develop a training plan, a criteria readiness plan, and a recruitment plan of national and state family partner organizations. 

The following family organizations were recruited and asked to select two representatives from their respective organizations to join the FATE Project:  

The Six National Family Organizations:

• The National Family Association for Deaf-Blind (NFADB) - Lead organization
• CHARGE Syndrome Foundation
• The Global Foundation for Peroxisomal Disorders (GFPD)
• Usher Syndrome Coalition
• Ava’s Voice (a NFADB Affiliate)
• Lane of Inquiry (a NFADB Affiliate)

The Six State Family Organizations and NFADB Affiliates:

• AEFDB (AK) Arkansas Empowering Families of Deafblindness 
• DBMAT (TX) The Deaf-Blind Multihandicapped Association of Texas
• FPDB-FL/VI (FL &VI) Family Partners for the DeafBlind of Florida and the U.S. Virgin Islands
• NYPADB (NY)The New York Parent Association for Deaf-Blind 
• PPDB (PA) Pennsylvania Partnership for the DeafBlind
• Texas CHARGERS (TX)

The pilot year of our FATE project consisted of three (3) distinct and separate phases as described below: 

Phase I: Advocacy Training of Family Members

The goal of Phase I is to hone the advocacy skills of family members.  It consists of intense six-week Advocacy training led by Diana Autin, an attorney and Executive Director of the National Center for Parent Leadership, Advocacy, and Community Empowerment (National PLACE)

Topics of training:

1. Developing an Effective Policy Advocacy Plan
2. Is it lobbying? Is it not?
3. Effective Grassroots Advocacy
4. The Power of Stories in Policy Advocacy
5. Effective Use of social media in Policy Advocacy
6. Identifying and Securing Resources for Policy Advocacy

Phase II: Develop National Advocacy Agenda

The goal of Phase II is to come together and agree on three (3) advocacy agenda items, it is NOT intended to change each organizations’ own advocacy goals.  Rather, FATE will focus on issues that are common to all of our family organizations with this pilot project. We will focus on issues that are not etiology specific and impact a large number of individuals who are Deaf-Blind. 

Phase II will be facilitated by Dr. Joni Alberg of Yale, Alberg and Associates.

Phase III: Education of Legislators 

The goal of Phase III is to educate legislators on the needs of individuals who are Deaf-Blind and their families. For this pilot year, FATE will join Barbara Raimondo from The Conference of Educational Administrators of Schools and Programs for the Deaf (CEASD) for the educational and advocacy summit and Capitol Hill Advocacy Day Summit.  “Day on the hill” will be virtual in February 2022.

FATE, next training series coming in Early 2025!

Advocacy Blog