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National Advocacy Agenda Issue #1 Letter to OSEP

30-Sep-2022 9:55 AM | Jacqueline (Administrator)

August 25, 2022

Dear Ms. Williams,

The National Family Association for Deaf-Blind (NFADB) is a nonprofit, 501(c)(3) organization that has served families with individuals who are Deaf-Blind since 1994. 

Originally started by and for families, NFADB has expanded to include any interested individuals, professionals, organizations, and agencies that wish to empower the voices of families with individuals who are Deaf-Blind and advocate for their unique needs.

We are a Board of volunteers and we work to support families and provide a family voice at events hosted by state Deaf-Blind projects and national venues, to include the Deaf-Blind Summit.

Below we have included a national advocacy agenda developed by families representing eleven (11) family organizations from across the United States.  This agenda expresses a common need for our Deaf-Blind children, regardless of etiology.

National Advocacy Agenda

Require States to include “services to students who are Deaf-Blind in special education State Plans” via addenda to existing plans & inclusion in future State plans. The plan should include:

  1. Definition – We recommend adding this definition to the existing definition in IDEA

    1. Justification - To ensure that our children are properly identified in the child count, which determines allocation of funds to our state Deaf-Blind projects.

  2. Qualified Personnel - We suggest that qualified personnel include Teachers of Students who are Deaf-Blind and Interveners

    1. Justification - For our children it’s not Deaf PLUS Blind, it’s Deaf TIMES Blind, as the dual sensory loss has an exponential impact. They have very unique needs and require teachers certified in Deaf-Blindness to help them navigate the educational system.  Please read NFADB’s Position Paper on Qualified Personnel here.

  3. Interveners - We propose that Interveners be written explicitly in the list of permitted related services for all Deaf-Blind

    1. Justification - Interveners are trained to provide access to environmental information necessary to ensure a free appropriate public education to children who are Deaf-Blind. Please read NFADB’s Position Paper on Interveners here.

  4. Technical Assistance - We urge the Department to provide funding for technical assistance ( i.e., NCDB and State Deaf-Blind Projects) at levels commensurate with the needs of students who are Deaf-Blind and their families.  

    1. Justification - Families would be lost without State Deaf-Blind projects. The projects provide a range of services to improve results for us and our children who are Deaf-Blind.

  5. Transition plans - We request that transition plans to adult life should align with a State Plan for Adults.

    1. Justification - Transition planning is mandated by IDEA and helps youth with Deaf-Blindness get ready for college, vocational training, employment, and community life once they leave school.  The plan does not necessarily follow the child into the adult setting, leaving family members scrambling to piece things together.

We are appreciative of the excellent guidance provided by OSEP and OCR around discipline for children with disabilities. While this generic guidance has relevance to children who are Deaf-Blind, there are other considerations that must be taken into account for this population of students. We are sharing for your review and consideration the following resource regarding discipline of children who are Deaf-Blind - read more.  

We thank you for your interest in ensuring that all children who are Deaf-Blind receive the free, appropriate public education in the least restrictive environment to which they are entitled under IDEA. Please reach out to us at your earliest convenience to discuss these recommendations in greater detail.

Respectfully Submitted,

Jacqueline Izaguirre & Melanie Knapp

National Family Association for Deaf-Blind

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


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