National Family Association for DeafBlind Advocacy Blog

National Advocacy Agenda Update

Jacqueline — Mon, 20 Jan 2025 19:16:54 GMT

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:

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

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

Qualified Personnel - We suggest that qualified personnel include Teachers of Students who are DeafBlind 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 DeafBlindness to help them navigate the educational system.

Please read NFADB’s Position Paper on Qualified Personnel.

Interveners - We propose that Interveners be written explicitly in the list of permitted related services for all DeafBlind

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:

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 DeafBlind require access to their environment and facilitation of communication with people encountered in their surroundings.

We propose that all states offer a DeafBlind Medicaid Waiver to adults who are DeafBlind.

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

Advocating for our Children!

Jacqueline — Wed, 02 Aug 2023 15:51:45 GMT

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.

Melanie Knapp (Melanie@nfadb.org)
Jacqueline Izaguirre (jacqueline@nfadb.org

We Count Too! Why Define DeafBlind?

Jacqueline — Tue, 15 Nov 2022 13:57:15 GMT

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

(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 DeafBlind and let us know if you have a preferred definition.

National Advocacy Agenda with Links

Jacqueline — Fri, 30 Sep 2022 13:58:35 GMT

The National Family Association for DeafBlind (NFADB) is a nonprofit, 501(c)(3) organization that has served families with individuals who are DeafBlind 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 DeafBlind 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 DeafBlind projects and national venues, to include the DeafBlind 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 DeafBlind. We feel that this agenda expresses a common need for our DeafBlind children, regardless of etiology.

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:

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

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

Qualified Personnel - We suggest that qualified personnel include Teachers of Students who are DeafBlind 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 DeafBlindness to help them navigate the educational system.

Please read NFADB’s Position Paper on Qualified Personnel.

Interveners - We propose that Interveners be written explicitly in the list of permitted related services for all DeafBlind

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.

2. Require States to develop 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:

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 DeafBlind require access to their environment and facilitation of communication with people encountered in their surroundings.

We propose that all states offer a DeafBlind Medicaid Waiver to adults who are DeafBlind.

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. We appreciate all that you and your state DeafBlind 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 DeafBlind

www.nfadb.org

National Coalition on DeafBlindness Update

Jacqueline — Wed, 28 Aug 2019 20:55:25 GMT

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

Transformation to Competitive Employment Act

Jacqueline — Fri, 07 Jun 2019 16:45:51 GMT

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.