ADVOCACY

NFADB developed a committee, the Policy, Information, and Education (PIE) Committee, in 2017 devoted to sharing information about legislative activities impacting our families with loved ones who are Deaf-Blind. 

The Policy, Information, and Education (PIE) Committee's mission:  This committee will provide public support for or make recommendations for particular causes or policies that will benefit the Deaf-Blind community.  

The PIE Committee activities include: (1) development of NFADB's first position papers, (2) hosting family chats about the Cogswell-Macy Act, (3) organizing Twitter blasts in support of the Cogswell-Macy Act, and (4) hosting Family Advocacy, Training, and Education series to build a network of family advocates. 

Click the links below for more details.

Position Papers

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.


 

A family's perspective on Qualified Personnel

Get a family's position on Interveners

Get a family's position on Teachers of Students who are Deaf-Blind



A Family Focus on the Cogswell - Macy Act 


I

Tweet Your Legislators

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

1. Find your legislators here

2. Get their 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 Twitter Blast within your state or organization.

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

Family Advocacy Training and Education

Purpose

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

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 FATE project consists 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.


Advocacy Blog

OUR MISSION:  NFADB exists to empower the voices of families with individuals who are deaf-blind and advocate for their unique needs.

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