Calling All Spellers to Know Your Rights! 

Written by the Spellers & Allies Advocacy Network

I-ASC’s Spellers & Allies Advocacy Network (S&A) has been learning about the rights of nonspeaking individuals in schools and colleges. Our investigation was kicked off with a guest presentation from Dawnmarie Gaivin, an Spelling to Communicate (S2C) Practitioner and I-ASC Leadership Cadre member, about the rights of nonspeaking individuals in the United States.

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM

[Image of the Spellers & Allies Advocacy Network Logo. On the left are 4 colored rectangles stacked vertically in the order blue, green, yellow, and grey from top to bottom. Within the grey rectangle, in white it says I-ASC. On the right is written Spellers & Allies Advocacy Network]

Following the presentation, Sarah Ackerman, a minimally speaking member of S&A said, “After Dawnmarie’s presentation, I realized the importance of knowing one’s rights. It is extremely essential that people become aware of disability law and understand what they are entitled to. This knowledge can empower individuals to stand up for themselves and can pave the way for future generations of nonspeakers.” Ben Crimm, another S&A nonspeaking member reflected, “I think it is important to understand that the language and terminology we use in discussions with others must echo the legal terminology, principles, and rights that have already been established in the law.” Through our reflections, S&A determined that it is important for all nonspeaking people to know about three laws: the Americans with Disabilities Act (ADA), the Assistive Technology Act, and the Individuals with Disabilities Education Act (IDEA).

Americans with Disabilities Act (1990)

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM

[Image of a zoom screenshot. A slide that is titled “So how does Federal Law inform S2C?” can be seen. On the right is a gallery view of 12 screens. Some people with video cameras on and some without]

The Americans with Disabilities Act (ADA) requires that state governments, local governments, businesses and nonprofit organizations (entities) that serve the public communicate effectively with people with communication or speech disabilities. (Free Lesson on ADA) Included in this is a person’s ability to communicate with, receive information from and communicate information to the public entities described above. Considerations for “effective communication” include the nature, length, complexity and context as well as an individual’s normal method of communication. S2C is effective communication because it gives the individual access to the entire alphabet which does not limit what they can and cannot communicate, it also allows individuals to produce original, open-ended and unlimited communication.  

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM

[Image of a mural on a long narrow set of steps. An image of Justin Dart Jr. is on the left. A white man wearing a beige cowboy hat, glasses slouched down on his nose, a red tie, suit and overcoat. He has grey hair and blue eyes. Above the image it reads “The promise of the ADA is that all people with disabilities will be fully equal, fully productive, fully prosperous, and fully welcome participants in the mainstream.”]

Under the ADA, a letterboard would be considered an “auxiliary aid and service” and it is the responsibility of the public entity a nonspeaking individual is interacting with to provide the needed service. A discovery that S&A ally, Aman Asfah, continued thinking about after Dawnmarie’s presentation is that the ADA gives primary consideration to the nonspeaking individual to choose their preferred aid or service in order to communicate. This means that if a nonspeaking person says that they prefer to use a letterboard to other modes of communication, this request should be honored under the ADA. 

 

Assistive Technology Act (2004)

 “I learned that S2C is a form of AAC. After hearing her speak, I was better informed about the rights of nonspeakers. She was extremely knowledgeable in the area of disability law and an excellent resource and ally,” said Sarah Ackerman.

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM

[Image of a mural on the Smithsonian steps of Ed Roberts. On the left is a middle aged white man with grey hair and a grey beard. He is wearing a yellow collared shirt and has a white tube in his mouth. To the right is a written quote that says, “We, who are considered the weakest, the most helpless people in our society, are the strongest and will not tolerate segregation, will not tolerate a society which sees us as less than whole people”]

Spelling to Communicate (S2C) is best understood as a form of Alternative and Augmentative Communication (AAC) where S2C Practitioners provide an assistive technology service (AT services) by teaching nonspeaking, minimally speaking, and unreliably speaking individuals with motor difficulties how to communicate by pointing to letters. Under the US Assistive Technology Act of 2004, States have to provide direct aid to ensure that people with disabilities have the assistive technology that they need. AT services are described in the IDEA (which we will further discuss below) as “any services that support a child in the selection, acquisition, or use of an assistive technology device.” 

Furthermore, in the IDEA, an assistive technology device (AT device) is described as, “any piece of equipment or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain or improve the functional capabilities of children with disabilities. The term does not include a medical device that is surgically implanted or the replacement of such device.” S2C is best described as Alternative and Augmentative Communication (AAC) because this title addresses AT devices that specifically support individuals with effective communication. The materials used in S2C: letterboards including stencils, laminates, foam boards, as well as wireless keyboards, Ipads, computers, and text to voice applications are all examples of AT Devices. (Take a deeper dive into understanding how S2C is a form of AAC here).

Individuals with Disabilities Education Act (1999)

Divyesh Jain, a nonspeaking member of S&A said, ”We need to share information about the laws that help nonspeakers use letterboards in schools and colleges to study with their peers.” Ben Crimm reflected, “I firmly believe that we have the legal justification to demand that schools must provide academic instruction in the least restrictive environment, and that special education classes as currently conducted do not meet that standard. Students who are nonspeaking are legally entitled to all Assistive Technology that they require, including alphabet boards, electronic devices and communication support staff, in order to exercise their fundamental right to communicate. Let’s recruit accomplices, not just allies, who will work with us and march toward our goal!” We learned from Dawnmarie that Ben is absolutely right, here is how the laws we’ve already discussed come together to ensure nonspeaking people the right to choose and have their choice of AAC in mainstream classrooms. 

Today the IDEA instituted in 1999 is in place to ensure that disabled students are given the support they need to access education. Within the IDEA inclusion is made up of two elements. The first is the right to the Least Restrictive Environment (LRE) which means that disabled students should be educated within classrooms with typical mainstream peers to the fullest extent possible. It goes on to say that “removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.” 

The second element of IDEA that ensures inclusion of nonspeaking individuals in schools is the right to Free Appropriate Public Education (FAPE). FAPE states that educational programs need to be individualized to a specific child so that it meets the child’s needs, provides access to general curriculum, meets grade-level standards established by the State, and provides educational benefit. When FAPE and LRE come together every student must be provided with the support and accommodations they need in order to learn alongside their peers in general education classrooms. 

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM

[Image of an equation that reads: FAPE (Free “Appropriate” Public Education) + LRE (least restrictive environment)= Inclusion]

Research demonstrates that disabled and nondisabled students receive better math and reading scores, better social and communication skills, fewer referrals for disruptive behaviour, and higher likelihood for employment and independent living when educated together. Thus nonspeakers can rest assured that their presence in general education classrooms has demonstrated an increased benefit to their nondisabled peers. During Dawnmarie’s presentation she emphasized that the law does not say that disabled students can only access education if they earn it or if they keep up. Nonspeaking people have a right to inclusive education as described by LRE and FAPE no matter what. 

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM

[Image of a mural on the Smithsonian American Art Museum steps of Judy Heumann. A white woman in a pink turtleneck and blazer. She has chin length brown hair and purple glasses. She is smiling. To the right is a quote that reads: “Disability only becomes a tragedy when society fails to provide the things we need to lead our lives”]

Danny Whitty, a nonspeaking member of S&A reflected “The main points for me were the immense resistance schools put into denying our access to communication by letterboard; the services I was blocked from in school; the potential I lost over years of segregated education; and the laws already in place need to be implemented. These thoughts trouble me, but motivate me to advocate for our community.” Danny amongst others in our network shared experiences of being blocked from using a letterboard in their educational environments. Often schools seem to believe that forms of AAC aside from S2C provide more effective communication for nonspeaking people and therefore provide these AT services and devices to their students. Nonspeaking students however can take back their right to choose their method of communication through the ADA which states that primary consideration is given to the disabled individual to decide their preferred mode of communication. This means that if nonspeaking people are using S2C or letterboards outside of school and it is their most effective mode of communication, they can request it in school and the school, under US disability laws, must provide it as well as the necessary training, and services for it to be used effectively. 

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM

[Image from Capitol Crawl that took place in 1990. Several dozen disability activists have abandoned their wheelchairs and are crawling up the steps outside the Capitol Building.]

After learning all of this Becky, an ally member of S&A, said, “The law states that people with disabilities have the right to education while using whichever Augmentative and Alternative Communication method best suits them. So why do people who are nonspeaking/ who spell to communicate have to fight so hard for inclusion in a regular classroom and for the ability to use a letterboard to help them communicate in that classroom? Freedom of expression is a fundamental human right – nonspeaking people deserve access to appropriate education just like everybody else.” Many of us were left with many perplexing and upsetting reflections like this one. We were also left with motivation to advocate for change and for the implementation of these laws for all nonspeaking people. Monica, an ally and coordinator of S&A, reflected, “As I sat with S&A following Dawnmarie’s presentation, I had a visceral understanding of why education about one’s rights is a transformative experience.” Divyesh said, “I am thinking about using the laws to support nonspeakers gain access to Spelling to Communicate in schools and colleges. I want schools and colleges to train all teachers to be communication and regulation partners.“ The ADA was created in response to advocacy efforts of disabled people such as the Capitol Crawl. The Spellers and Allies Advocacy Network plans to advocate to make access to education and effective communication a reality for all nonspeaking, unreliably speaking, and minimally people. 

Special thanks to Dawnmarie Gaivin for coming to speak with the Spellers & Allies Advocacy Network. As Sarah shared, you are a resource and ally! 

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPMThe I-ASC Spellers & Allies Advocacy Network is a group of spellers and allies between the ages of 18- 30 who advocate together around issues that concern nonspeaking people, such as agency, autonomy, and access. Through public education and advocacy campaigns, we seek to make real change for all nonspeaking people.

 

 

Sources: 

IDEA:

http://www.fortelawgroup.com/least-restrictive-environment-lre-mean/

https://www.understood.org/en/school-learning/your-childs-rights/basics-about-childs-rights/individuals-with-disabilities-education-act-idea-what-you-need-to-know

Assistive Technology Act:

https://www.govinfo.gov/content/pkg/PLAW-108publ364/html/PLAW-108publ364.htm

ADA:

https://www.ada.gov/effective-comm.htm#:~:text=The%20ADA%20places%20responsibility%20for,interpret%20in%20only%20two%20situations.

Capitol Crawl:

https://www.brandingmag.com/2015/08/04/capitol-crawl-25th-anniversary/

https://activisthistory.com/2017/08/11/the-blind-historian-and-other-fables/

https://www.law.cornell.edu/uscode/text/20/1412

S2C as AAC:

https://i-asc.org/the-abc-of-s2c-aac/

 

The mission of I-ASC is to advance communication access for nonspeaking individuals globally through training, education, advocacy and research.  I-ASC supports all forms of augmentative and alternative communication (AAC) with a focus on methods of spelling and typing. I-ASC currently offers Practitioner training in Spelling to Communicate (S2C) with the hope that other methods of AAC using spelling or typing will join our association

Posted By on Wednesday, September 9th, 2020 in Advocacy,Autism,Community,Education,Families,Motor,Nonspeakers,S2C,Spelling to Communicate

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