In preparation for our 3rd annual DeafBlind Day on the Hill, we are providing an update to the national advocacy agenda.

This agenda was developed our pilot year by family leaders representing twelve (12) family organizations from across the United States after they completed NFADB’s Family Advocacy Training and Education (FATE).

Below is the national advocacy agenda as originally drafted. It contains two asks (1) State Plan for children who are DeafBlind and (2) State Plan for adults who are DeafBlind.

We are excited to share that ask #1 will be introduced as a stand-alone bill this Congressional session. It contains the elements from Title III of the Cogswell-Macy Act.

We will continue to advocate for legislation to address ask #2, a bill for adults who are DeafBlind.  

NATIONAL ADVOCACY AGENDA

This original request #1 will be introduced as the Title III Bill (name to be determined) this Congressional session!

1. Require States to include “services to students who are DeafBlind in special education State Plans” via addenda to existing plans. The state plan should include:

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

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 DeafBlindness to help them navigate the educational system. 

Please read NFADB’s Position Paper on Qualified Personnel.

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

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

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

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

Justification - Transition planning is mandated by IDEA and helps youth with DeafBlindness 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 will continue to request legislation that will address our second ask:

2. Require a State Plan for Adults who are DeafBlind. Ensure the timely implementation of appropriate services and supports for adults who are DeafBlind for a successful transition from school to adult life, including but not limited to post-secondary education, the workforce, or other settings.

The goal is a purposeful life of their choice.  The plan may include:

Justification - Our education team works hard to develop a transition plan to ease our children into adult life. The effort is lost if adult services are not in sync with that transition plan.

Justification - Individuals who are DeafBlind require access to their environment and facilitation of communication with people encountered in their surroundings.

Justification - Individuals who are DeafBlind have unique needs and some need additional support to maintain their independence in their community, rather than live in a long-term care facility. 

We thank you for your interest in ensuring that all individuals who are DeafBlind reach their full potential. Please reach out to us if you have any questions regarding our continued advocacy efforts.

Respectfully Submitted,

Jacqueline Izaguirre & Lissa Elkins

National Family Association for DeafBlind

www.nfadb.org