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Ethical Violations in Study Relied Upon by ASHA Committee
September 6, 2018
Board of Directors
American Speech-Language-Hearing Association (ASHA)
2200 Research Boulevard
Rockville, MD 20850-3289
Re: Ethical Violations in Study Relied Upon by ASHA Committee
To the ASHA Board of Directors,
United for Communication Choice, a grassroots effort of individuals with disabilities, their families, and allies, writes to reiterate its requests that ASHA withdraw untenable statements on the Rapid Prompting Method (RPM) and Facilitated Communication (FC) put forth by an Ad Hoc Committee. The Committee’s contemptuous tone and attempt to dictate whether and how people with disabilities should communicate appear to conflict with ASHA’s tagline: “Making effective communication, a human right, accessible and achievable for all.”
Compounding the serious ethical, scientific, legal, and practical concerns raised previously by disability groups and individuals are new questions surrounding the Committee’s actions in relation to a discredited study.
We have learned that an “in press” manuscript by Jason Travers, Kevin Ayres, Cary Trump, and Rachel Cagliani, cited repeatedly in the August 8 statement on RPM, was retracted by the Journal of Autism and Developmental Disorders after the University of Georgia Institutional Review Board found the researchers had committed serious ethical violations.
ASHA has a stated commitment to “ethically appropriate research and scholarship.” However, the Committee’s handling of this retracted study calls that commitment into question:
1. We have reason to believe that Committee members were aware the study was under investigation at least four days before the RPM statement was finalized and released on August 8.
2. Despite ASHA being officially notified of the ethical violations no later than August 23, references to the discredited study were not removed until late on August 31.
3. The revised statement acknowledges in a footer that the statement has been amended to remove the references, but it does not explain that this is because the authors committed serious ethical violations. To the contrary, the footer (“article … was subsequently withdrawn by the authors”) gives the false impression the authors did so of their own volition.
4. The Committee downplayed the extent of its reliance on the discredited study by describing the removal of “one previously cited article and mention of it.” The footer suggests there was just one such “mention,” when in fact the August 8 statement cited the study at least four times, as much or more than any other study cited.
5. The revised statement continues to promote the retracted study in its “Recommendations” section, alluding to it as “emerging scientific evidence” without actually citing it.
6. The Committee had the opportunity to acknowledge that serious ethical violations led to the retraction of the study and to explicitly condemn this unethical behavior. It did not do so.
7. ASHA notably disclaims responsibility for any consequences resulting from complying with its policy statements, and even explicitly disavows their “accuracy.” But refusing to take responsibility to notify consumers of a confirmed inaccuracy and ethical violation raises questions about the Committee’s own adherence to ethical standards.
a. The statement referencing the discredited study was widely promoted with a press release, a social media blitz, and an interesting public relations video featuring ASHA’s CEO. The original version of the statement remained on ASHA’s website from August 8 to August 31, and was read, printed, and downloaded by an unknown number of ASHA members and others. Unless one of those readers happens to visit the webpage again and actually re-reads the entire document to the very end, including the References and Disclaimers section, they will never know anything in the statement has been altered. They certainly will never know it was changed because of ethical violations.
In light of these developments, and the Committee’s known associations with the discredited researchers, we encourage you to investigate the Committee’s actions, especially given the rush to finalize the controversial statements several months earlier than scheduled in the face of overwhelming opposition from the disability community.
By its own admission, less than one-half of one percent of ASHA’s membership supported the statements. They are rife with factual inaccuracies and utilize defective and circular logic. The Committee relied upon a limited segment of published research, unpublished work, and baseless assertions. Evidence contradicting the personal agendas of Committee members was discounted and excluded. And many ASHA members find concerning the statements’ implication that they may no longer engage in any “facilitator-dependent” practice that is not backed by scientific evidence, including the teaching or use of virtually all augmentative and alternative communication methods.
We strongly urge the ASHA Board to consider the views of disability groups and individuals with disabilities in matters related to how they choose to communicate. If the Board would be interested in engaging in such a dialogue, we would be more than happy to coordinate this. Please contact Suzanne Lotharius at [email protected].
Sincerely,
United for Communication Choice
https://unitedforcommunicationchoice.org
Compilation of Individual Letters to ASHA
Please click here for a compilation of individual letters to ASHA.
National Coalition, United For Communication Choice Oppose ASHA’s Attempts to Restrict Communication Choice
Read the PR Newswire release here.
23 organizations call on ASHA to withdraw misguided recommendations on RPM and FC
WASHINGTON, July 17, 2018 /PRNewswire/ — A diverse coalition of 23 civil and disability rights organizations has called on the American Speech-Language-Hearing Association (ASHA) to withdraw two proposed position statements that recommend against the further use of methodologies known as Rapid Prompting Method (RPM) and Facilitated Communication (FC). These innovative methods teach individuals with speech-related disabilities how to communicate independently by typing and pointing to letters on letterboards.
In a letter to the ASHA Board of Directors, the coalition argued, “If ASHA decides to finalize and place its imprimatur on the position statements, the consequences will almost certainly lead to civil rights violations. ASHA’s reputation as a credible and mainstream credentialing organization that supports the rights of individuals with disabilities would be threatened.”
In requesting that ASHA withdraw the flawed proposals, the coalition raised several substantive and procedural concerns, including that the recommendations:
Signing organizations include The Arc of the United States, Autistic Self Advocacy Network (ASAN), Burton Blatt Institute, Center for Public Representation, Council of Parent Attorneys and Advocates, Inclusion International, the National Disability Rights Network, and TASH.
ASAN Executive Director Julia Bascom commented that “each non-speaking person has a right to use the method of communication that works best for them.” Bascom said the ASHA statements could “dramatically undermine the right of all people to the individualized supports they may need in order to communicate. Losing an effective form of communication can result in frustration, isolation, and trauma.”
Since being proposed on June 1, 2018, the ASHA position statements have sparked significant stakeholder concern and helped mobilize a parallel grassroots effort to vigorously support communication choice for non- speaking children and adults living with various neurological and motor disabilities, including autism. The resulting campaign is committed to defending every citizen’s right to access their preferred means of communication to express their thoughts. More information can be found at http://UnitedForCommunicationChoice.org.
Far From the Tree
A documentary based on the best-selling book of the same name by Andrew Solomon, which shares intimate stories of families with children who have disabilities. The documentary features a group of children who type and use letterboards to communicate. See the preview here and the documentary’s release schedule here.
Coalition of Civil and Disability Rights Organizations
PDF of Letter
PDF of Press Release
July 16, 2018
Board of Directors
American Speech-Language-Hearing Association (ASHA)
2200 Research Boulevard
Rockville, MD 20850-3289
To the ASHA Board of Directors,
We write to respectfully urge you to withdraw two proposed position statements that recommend against the further use of methodologies designed to teach individuals with speech-related disabilities how to communicate using letterboards and keyboards.[1] Our request is grounded in the following concerns:
First, practitioners who follow the proposed recommendations risk being found in violation of the Americans with Disabilities Act (ADA). ADA regulations mandate that public entities, including schools, support an individual’s preferred means of communication except in extenuating circumstances. 28 C.F.R. § 35.160. The statements, if finalized, would put ASHA members and their employers in the awkward and untenable position of deciding whether to comply with federal law or with the contrary guidance of a nonprofit credentialing organization.
Second, the proposed recommendations are grounded dubiously on the absence of quantitative evidence. Any ASHA decision that could result in the denial of access to communication for hundreds if not thousands of individuals with disabilities and thus an infringement of their civil rights ought to be subject to an extraordinary burden of proof. Pointing out a need for additional research may be appropriate, but recommending that all practice cease in the meantime is not.
Third, the premise underlying the proposed statements—that the individuals using these methods are not capable of the complex thoughts they express—is unfounded and discriminatory. This echoes historical attitudes that neglected the capabilities of other populations with communication disabilities, including those who are Blind, Deaf, Deaf-Blind, or have physical disabilities affecting speech.
Finally, the process of developing the proposed statements lacked transparency and a diversity of inputs. Our understanding is that the committee refused to allow any user or professional (including ASHA members) with experience in either methodology to participate in or provide input into the committee’s year-long review process of developing the proposals.
If ASHA decides to finalize and place its imprimatur on the position statements, the consequences will almost certainly lead to civil rights violations. ASHA’s reputation as a credible and mainstream credentialing organization that supports the rights of individuals with disabilities would be threatened. Given the stakes, we urge you to withdraw the proposed position statements from further consideration.
Sincerely,
Alliance for Citizen Directed Supports
The Arc of the United States
Autism and Communication Center
Autism National Committee
Autistic Self Advocacy Network
Autistic Women & Nonbinary Network
Burton Blatt Institute
Center for Public Representation
Council of Parent Attorneys and Advocates
Foundations for Divergent Minds
Gamaliel Network
Inclusion International
Institute on Communication and Inclusion
National Disability Rights Network
Nonspeaking Community Consortium
Ollibean
PEAK Parent Center
Quality Trust
Reid’s Gift
SLP Neurodiversity Collective
TASH
Thinking Person’s Guide to Autism
United for Communication Choice
[1] https://www.asha.org/peer-review/Proposed-ASHA-Position-Statement-Rapid-Prompting-Method/; https://www.asha.org/peer-review/Proposed-ASHA-Position-Statement-Facilitated-Communication/
ASAN