Menu
Log in


  • 02-Aug-2023 11:51 AM | Jacqueline (Administrator)

    We all know that we do not have a law to protect our children. Families are at the mercy of their school districts because there is no law that says our children are entitled to qualified personnel trained to teach our children. IDEA currently requires Teachers of Deaf / Hard of Hearing or Teachers of Blind / Visually Impaired but does not require a Teacher of DeafBlind. We need both Teachers of DeafBlind and Interveners. Interveners will provide access to the information provided by the teacher. It is up to families to advocate for their children. 

    As a result of sharing our National Advocacy Agenda with Representative Matt Cartwright's office, we have been discussing the possibility of introducing Title III as a separate bill. You may have already read the position paper written by the National Coalition on Deafblindness (attached).

    We need to show the power of our family voices in support of a new bill for our children who are DeafBlind.

    If you would like to add your name to the list of friends and families that support the new bill, please respond to Melanie and Jacqueline (emails below).

    If you represent an organization, please let us know ASAP if you would like your organization's logo to be included in our letter to Representative Matt Cartwright's office.

    Please let us know if you have any questions.


  • 15-Nov-2022 8:57 AM | Jacqueline (Administrator)

    Our National Advocacy Agenda recognizes that we need to "tweak" the existing definition in IDEA, We pointed to this definition in the Cogswell-Macy Act, but maybe we should consider other definitions. The objective is to ensure that our children are properly identified in the child count, which determines allocation of funds to our state Deaf-Blind projects.

    Why is this so important? 

    The US Department of Education (ED) is required by the Individuals with Disabilities Education Act (IDEA) to report to Congress annually on the number of children receiving special education, by disability category, for ages 3-21 years. The count must be unduplicated – that is, children can only be counted in one category, regardless of the number of disabilities they experience.

    For this count, the primary ranking is the only one reported to the federal government for IDEA data collection. Therefore, unless the Deafblind label is stated as the primary disability it will not be recorded on this count. This information is used in policy development. Since deafblindness is the rarest of the low incidence groups, it is important to be sure they are not missed. Policy makers may not see the separate Deafblind Child Count with information collected by state deafblind projects and compiled by the National Center on Deaf-Blindness. 

    Here's a few definitions used by various sources across the world of Deaf-Blind:

    From The Helen Keller Act - US CODE, TITLE 29 – LABOR, CHAPTER 21 - Sec. 1905

    (1) the terms ''Helen Keller National Center for Youths and Adults who are Deaf-Blind'' and ''Center'' mean the Helen Keller National Center for Youths and Adults who are Deaf-Blind, and its affiliated network, operated pursuant to this chapter;

    (2) the term ''individual who is deaf-blind'' means any individual -

      (A) (i) who has a central visual acuity of 20/200 or less in the better eye with corrective lenses, or a field defect such that the peripheral diameter of visual field subtends an angular distance no greater than 20 degrees, or a progressive visual loss having a prognosis leading to one or both these conditions;

      (ii) who has a chronic hearing impairment so severe that most speech cannot be understood with optimum amplification, or a progressive hearing loss having a prognosis leading to this condition; and

      (iii) for whom the combination of impairments described in clauses (i) and (ii) cause extreme difficulty in attaining independence in daily life activities, achieving psychosocial adjustment, or obtaining a vocation;

      (B) who despite the inability to be measured accurately for  hearing and vision loss due to cognitive or behavioral constraints, or both, can be determined through functional and performance assessment to have severe hearing and visual disabilities that cause extreme difficulty in attaining independence in daily life activities, achieving psychosocial adjustment, or obtaining vocational objectives; or

      (C) meets such other requirements as the Secretary may prescribe by regulation; and

    (3) the term ''Secretary'' means the Secretary of Education.

    Source

    National Health Service (UK)

    Deafblindness is a combination of sight and hearing loss that affects a person's ability to communicate, access information and get around. It's also sometimes called "dual sensory loss" or "multi-sensory impairment". A deafblind person won't usually be totally deaf and totally blind, but both senses will be reduced enough to cause significant difficulties in everyday life. https://www.nhs.uk/conditions/deafblindness/ 


    Nordic Definition of Deafblindness 

    “Deafblindness is a combined vision and hearing impairment of such severity that

    it is hard for the impaired senses to compensate for each other. Thus, deafblindness is a distinct disability." The linked document goes on to describe how deaf-blindness impacts functioning.

    https://nordicwelfare.org/wp-content/uploads/2018/03/nordic-definition-of-deafblindness.pdf 


    World Federation of Deafblind

    "WFDB defines deafblindness as a distinct disability arising from a dual sensory impairment of a severity that makes it hard for the impaired senses to compensate for each other. In interaction with barriers in the environment, it affects social life, communication, access to information, orientation and mobility. Enabling inclusion and participation requires accessibility measures and access to specific support services, such as interpreter-guides, among others." Source: World Federation of the Deafblind. (2018). At risk of exclusion from CRPD and SDGs implementation: inequality and persons with deafblindness. Initial global report on situation and rights of persons with deafblindness. http://www.wfdb.eu/wp-content/uploads/2019/04/WFDB-global-report-2018.pdf 


    Deafblind International

    Deafblindness involves varying combinations of visual and hearing impairment to such an extent that neither the vision nor hearing can be employed as a means of accessing information, communication, and participation in society (Deafblind International, 1999). Cited in: Minhas, R., Jaiswal, A., Chan, S., Trevisan, J., Paramasivam, A., & Spruyt-Rocks, R. (2022). Prevalence of Individuals with Deafblindness and Age-Related Dual-Sensory Loss. Journal of Visual Impairment & Blindness, 116(1), 36-47.

    Please share your state's definition of Deaf-Blind and let us know if you have a preferred definition.


  • 30-Sep-2022 9:58 AM | Jacqueline (Administrator)

    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 this past year (our pilot year) by family leaders representing twelve (12) family organizations from across the United States.  This agenda is a product of NFADB’s Family Advocacy Training and Education (FATE). We are gearing up now for our second year of FATE. You can learn more about this family advocacy training on our website

    Many of those same family leaders are continuing their advocacy efforts to support this national agenda through our newly formed Family Advocacy Coalition Educating (FACE) for Deaf-Blind. We feel that this agenda expresses a common need for our Deaf-Blind children, regardless of etiology.

    National Advocacy Agenda

    1. 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:
    Justification - To ensure that our children are properly identified in the child count, which determines allocation of funds to our state Deaf-Blind projects.
    • Qualified Personnel - We suggest  that qualified personnel include Teachers of Students who are Deaf-Blind and Interveners

    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.

    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.
      • 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.  
    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.
      • 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 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.

    2. Require States to develop a State Plan for Adults who are Deaf-Blind. Ensure the timely implementation of appropriate services and supports for adults who are Deaf-Blind 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:

    • We highly recommend that the state plan for adults be coordinated with the Special Education State Plan (initially). 

    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.

    • We request that the state plan include the array of support services, to include  SSPs/CNs, Interveners, and Interpreters necessary to provide information, access, and communication required.
    Justification - Individuals who are Deaf-Blind require access to their environment and facilitation of communication with people encountered in their surroundings.
    • We propose that all states offer a Deaf-Blind Medicaid Waiver to adults who are Deaf-Blind. 

    Justification - Individuals who are Deaf-Blind 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 Deaf-Blind reach their full potential. We appreciate all that you and your state Deaf-Blind project do to prepare our children and families. Please reach out to us if you have any questions regarding our continued advocacy efforts.

    Respectfully Submitted,



    Jacqueline Izaguirre & Melanie Knapp

    National Family Association for Deaf-Blind

    www.nfadb.org


  • 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

    www.nfadb.org


  • 12-Jul-2022 11:52 AM | Jacqueline (Administrator)

    Our pilot FATE team developed this national advocacy agenda:

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

      1. Definition – We want to add this definition to the existing definition in IDEA

      2. Qualified Personnel - Teachers of Students who are DeafBlind and Interveners

      3. Interveners written explicitly in the list of permitted related services for all DB

      4. Technical Assistance - NCDB and State DeafBlind Projects (increase funding to meet current needs)

      5. Transition plans to adult life should align with a State Plan for Adults.


    2. Require States to develop a State Plan for Adults who are Deaf-Blind. 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. [1] The goal is a purposeful life of their choice.  The plan may include:

      1.  Coordination with the Special Education State Plan (initially).

          b.     The array of support services, to include  SSPs/CNs, Interveners, and Interpreter.

          c.      DB Medicaid Waivers 


  • 28-Aug-2019 4:55 PM | Jacqueline (Administrator)


    What is the Coalition’s mission?

    The National Coalition on Deafblindness provides information and advocacy in a collaborative way to policy makers, fiscal agents, education professionals and community leaders on behalf of children and youth who are deafblind, in conjunction and partnership with adults who are deafblind, families, and stakeholders.

    Who are the Coalition’s national partners?

    • American Association of the Deafblind
    • CHARGE Syndrome Foundation
    • DeafBlind Citizens in Action
    • Helen Keller National Center
    • National Family Association for Deaf-Blind
    • Usher Syndrome Coalition

    What does the Coalition do?

    The Coalition’s current focus is to advance the Alice Cogswell and Anne Sullivan Macy Act in the U.S. Congress (see more about the Cogswell-Macy Act below). The Coalition is in the process of incorporating as a 501(c)(3) non-profit organization so that we can begin recruiting organizational members and individual members who want to help support the Cogswell-Macy Act.

    What is the Alice Cogswell and Anne Sullivan Macy Act?

    The Cogswell-Macy Act is federal legislation that amends IDEA on issues specific to the education of students who are Deaf and hard of hearing, blind and visually impaired, and deafblind. The Act has three titles (or sections):

    • Title I: Improving the Effectiveness of Special Education and Related Services for Students who are Deaf or Hard of Hearing
    • Title II: Improving the Effectiveness of Special Education and Related Services for Students with Visual Disabilities
    • Title III: Improving the Effectiveness of Special Education and Related Services for Children and Youth who are Deafblind

    Title III, which is the section specific to deafblindness, amends IDEA to add interveners as a related service. Title III corrects the federal definition of deafblindness by proposing a new definition that is clearer and is consistent with other federal definitions. Title III also requires states to report on how they will ensure the availability of qualified interveners and teachers of children who are deafblind.

    The Cogswell-Macy Act has been introduced in the past three Congresses:

    Congress Years House and Senate bills

    • 113th Congress 2013-2014 House Resolution (HR) 3535
    • 114th Congress 2015-2016 House Resolution (HR) 4040
    • 115th Congress 2017-2018 House Resolution (HR) 1120 and Senate Bill (S) 2087

    In the House of Representatives, the Cogswell-Macy Act was introduced by Rep. Matt Cartwright (DPA) and co-sponsored by Rep. David McKinley (R-WV). At the end of the last Congress in 2018, the Cogswell-Macy Act had been referred to the House Committee on Education and the Workforce, where it eventually ‘died in committee.’ At that time, however, the Act had a record 48 bipartisan cosponsors, including 10 Republicans and 38 Democrats. In addition, the 115th Congress was the first time the Act was introduced in the U.S. Senate, which is a legislative necessity for a bill to move forward. In the Senate, the Act was introduced by Edward Markey (D-MA) and co-sponsored by Shelley Moore Capito (R-WV).

    For the full text of the Cogswell-Macy Act and list of co-sponsors in the House of Representatives from the last Congress in 2018, go to: https://www.congress.gov/bill/115th-congress/house-bill/1120.

    What’s happening right now with the Alice Cogswell and Anne Sullivan Macy Act?

    The Coalition is actively engaged with key stakeholder groups to make any needed minormadjustments to the Act’s language prior to the Act being re-introduced into the House and Senate. We are hopeful that we will have the continued support of House members and Senators who introduced or co-sponsored the legislation in the past.

    The Cogswell-Macy Act may or may not be passed by Congress as a stand-alone bill, or it may eventually be merged with other federal legislation. It is also possible that if Congress begins drafting language for the reauthorization of IDEA—which is many years overdue—the language in the Cogswell-Macy Act will be included in that reauthorization process. It is important to remember that many organizations and constituent groups support the intent of the legislation and this support will help us to ensure that these needed changes to IDEA are eventually enacted, either through passage of the Cogswell-Macy Act or through Congressional reauthorization of IDEA.

    What can you do to support the Alice Cogswell and Anne Sullivan Macy Act?

    Stay connected to the Coalition on Twitter. Once the Cogswell-Macy Act is reintroduced, we will need our supporters to contact their respective Representatives and Senators and ask that they support the legislation by co-sponsoring and by encouraging their colleagues to do the same. This should be an easy request. Personal stories from local constituents are powerful tools for getting the attention of lawmakers. This is legislation that improves services to a population of students that might be relatively small in number but that have extraordinarily complex and specialized educational needs.

    How can you learn more about the Alice Cogswell and Anne Sullivan Macy Act?

    To learn more about the Cogswell-Macy Act, go to: https://cogswellmacyact.org.

    Who constitutes the Leadership Team of the National Coalition on Deafblindness?

    The current Leadership Team of the Coalition includes the following individuals (listed alphabetically):

    Maurice Belote, California • Jacqueline Izaguirre, Texas (NFADB Liaison)

    Tracy Luiselli, Massachusetts • John Mascia, Alabama

    Follow the Coalition on Twitter: @DB_Coalition

  • 07-Jun-2019 12:45 PM | Jacqueline (Administrator)

    Transformation to Competitive Employment Act

    Senate - S. 260 - Sponsored by Bob Casey (D-PA)

    The Bill Read More

    Follow the Bill HERE

    House - H.R. 873 - Sponsored by Bobby Scott (D-VA-3)

    Click on related bills using the link above

    These bills would phase out Section 14(c) of the Fair Labor Standards Act over a six-year period, at which point the provision would officially be sunset.

    When you call or email, you might say something like the following:

    "Hello, my name is [your name] and I am a constituent of [your senator/representative]. I live in [city, state]. I am calling to urge [your senator/representative] to cosponsor [S. 260 for Senate calls/H.R. 873 for House calls], the Transformation to Competitive Employment Act. This bill would phase out subminimum wages for people with disabilities over a six-year period, at which point Section 14(c) of the Fair Labor Standards Act, the provision that allows this practice, would be sunset. I urge [your senator/representative] to cosponsor the bill.

    You can contact your member of Congress by calling the Capitol Switchboard and asking for the office in question. The number is 202-224-3121.


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

EXPAND YOUR FAMILY NETWORK

become a member of nfadb


SUPPORT NFADB

Our work is supported by organizations and individuals like you.  

Support our work


Donation goal

Goal: $50,000.00
Collected: $44,871.00
90%

CONTACT US

Phone: 800.255.0411
Fax: 516.883.9060

Email: info@nfadb.org

MAILING ADDRESS

PO Box 1667
Sands Point, NY 11050

Powered by Wild Apricot Membership Software