By Michael Nevradakis, Ph.D.

Proposed changes to a New York State bill that would deny state funding for certain types of communication methods, including those used by “spellers,” have prompted an outcry from disability advocates — including descendants of Helen Keller, a renowned 20th-century activist for the disabled who was deaf and blind.

The bill, whose stated purpose is “protecting the communication rights of individuals with disabilities,” passed in the New York State Assembly in June 2025.

However, last month, lawmakers amended the Senate version of the bill, narrowing protections to forms of communication that can be “validated.”

According to the amendment, “validated communication” refers to communication methods that are “evidence-based, empirically supported and [that have] demonstrated results in autonomous communication on the part of the person communicating.”

Lawmakers added the language to exclude “communication that could inadvertently reflect the thoughts of a support person instead of the person with developmental disabilities,” City & State New York reported.

In an open letter to state Sen. Patricia Fahy, author of the amendment, Keller’s niece, Margot Keller, and Margot’s daughter Brooks Hamilton, objected to the amended language.

“The recent amendments … weaken protections for the very people this bill was meant to support,” the letter states. They “fail to reflect the reality of how communication is often learned and accessed” by nonspeakers.

In an accompanying Instagram reel, Margot and Brooks said that Helen Keller, who was nonverbal, “did not communicate independently” — she relied on her communication partner, Anne Sullivan.

“Without Anne’s support, the world may never have heard Helen’s voice,” the video states.

John Gilmore, executive director of the Autism Action Network and a member of the federal government’s Interagency Autism Coordinating Committee, told The Defender that the amendments likely violate the Americans with Disabilities Act (ADA).

Gilmore said that while the amended bill left the term “autonomous” undefined, it likely means “there can be no assistance of any kind from another person.”

Gilmore said the bill also did not explain how the term “validated” would be measured or which entity would perform the validation.

“This gives state agencies carte blanche to approve or disapprove any method they want, even though the ADA clearly gives that choice to disabled people,” he said. Methods not approved by the state would not be eligible for funding under the ADA.

Amended bill has uphill fight, legally

Opponents have so far been able to block the amendment, which last week stalled in the state Senate Disability Committee.

“Fahy tried to slam [the amendments] through committee, which Fahy chairs,” Gilmore said. “But we were able to persuade five of the seven members of the committee to commit to oppose Fahy’s new bill, a bill which none of them have agreed to cosponsor.”

For now, the amended bill remains “sort of in limbo,” Gilmore said. “The Senate will not back Fahy’s bill. But if we are going to pass an identical bill to A7363 [the assembly’s version of the legislation], as is required by the New York State Constitution, we have to get a bill through Fahy’s committee.”

City & State New York reported that the competing versions of the bill have resulted in a “rift” between Fahy and the bill’s Assembly sponsor, Angelo Santabarbara, who chairs the assembly’s Disabilities Committee.

Santabarbara is the father of a child with autism. He told City & State New York that there has been pressure from the state’s Office of People with Developmental Disabilities (OPWDD), as “they will have complete control over everyone’s communication device, everybody’s communication method, and exactly the opposite of what everybody was fighting for.”

Gilmore agreed. He said the amended bill would give OPWDD and service providers “the power to limit the methods of communication to what they want to support regardless of what the disabled person either wants to use or has the ability to use.”

Michael Kane, director of advocacy for Children’s Health Defense, said the amended version of the bill ignores federal law — adding that this is common in New York.

“In New York, it has become common for the state to violate federal law on a regular basis,” Kane said. “No agency should prevent anyone from choosing the way they want and need to be heard by the world.”

Fahy told City & State New York that OPWDD has warned that the assembly’s version of the bill won’t withstand legal challenges.

New version of bill would have adverse effect on ‘spellers’

According to Fahy, the legislation “has to be grounded in evidence-based practice.” She said Medicaid requires that communication methods must be verified as belonging to the patient who is communicating through the use of those methods.

“In the end, it has to be the individual who is actually doing the talking,” Fahy told City & State New York.

In their letter, Margot Keller and Hamilton disagreed.

“For many, communication is not an autonomous act at the outset; it is something built through support, trust and partnership. By narrowing what qualifies as acceptable communication, these amendments risk closing the very door that once opened Helen Keller’s world,” they wrote.

Gilmore said that Fahy’s insistence on “autonomous” communication would exclude several types of interpreters who help disabled and nonverbal people communicate.

“Translators, including foreign language interpreters, American Sign Language interpreters, or any other assistance, would not be allowed. This includes all disabled people, including some who need assistance in doing every facet of daily life,” Gilmore said.

According to Gilmore, the bill’s amendments would also adversely impact “spellers” — nonverbal people who communicate through “Spelling to Communicate,” a method that involves pointing to letters or typing words and phrases on a letter board.

Common among autistic people, “spellers” were the subject of a 2023 documentary by the same name.

‘How many capable, brilliant individuals might remain unheard if communication access is restricted?’

Gilmore, the father of an adult nonspeaking son, said there is pressure to stop the passage of the bill in its original form “from agencies that do not want to spend any money on providing the support the disabled need to communicate.”

“There is also significant pressure coming from trade associations like the American Speech-Language-Hearing Association, that see spelling and other alternative forms of communicating as competition for speech therapy,” Gilmore said.

Gilmore said speech therapy does not work for everyone — including his son. “We need to develop alternatives.” He added:

“They are saying that everybody who uses a letter board to communicate is committing some sort of fraud. But for my son, and many other people, it is the only communication method that works for him. Sen. Fahy’s bill would take that away.”

Advocates like Gilmore and Kane have been joined by many others who also oppose the amended bill.

According to City & State New York, “Hundreds of advocates have flooded Fahy’s office with calls and letters criticizing the changes and contacted other members of the Senate Disability Committee urging them to vote against the measure.”

Among the advocates opposing the amendment is Evelyn Yang — wife of 2020 Democratic presidential candidate Andrew Yang and the mother of two autistic children. She told City & State New York the amendments are “against the law.”

“No professional organization, no state agency, can categorically refuse a type of communication,” Yang said.

“New York has the opportunity to protect nonspeakers’ rights,” Margot Keller and Hamilton stated in their letter. “How many capable, brilliant individuals might remain unheard if communication access is restricted? How many contributions might be lost? What would the world have lost if Helen Keller never learned to communicate?”

Related articles in The Defender

• ‘What if Everything You Knew About Autism Was Wrong?’ New Documentary Asks
• Judge Rules in Favor of Teen in Medical Exemption Lawsuit Funded by Children’s Health Defense
• ‘Underestimated: An Autism Miracle’ Tells of a Father-Son Journey of Hope
• RFK Jr.: ‘Blown Away’ by New Book on Autism

The post Family of Helen Keller Opposes Bill to Deny Funding for Some Nonverbal Communication Methods, Including Those Used by ‘Spellers’ appeared first on Children’s Health Defense.

 

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