Guest Blog

by Ana Paula G. Mumy, SLPD, CCC-SLP

It is disheartening when we hear that school-based SLPs are still being required to base eligibility for services for children who stutter solely (or primarily) on percentages of observable disfluency.

As our understanding of the speaker’s experience of stuttering increases via research evidence, patient evidence, and clinical practice, eligibility criteria for receiving stuttering services in the schools must be analyzed and challenged.

A Deeper Dive into the Regulations

First, we know that the Individuals with Disabilities Education Act (IDEA’04) mandates state education agencies and local school districts to provide special education services to eligible children ages 3-21 in order to provide a free, appropriate public education (FAPE). The question of “need” for children with communication challenges is tied to how the communication disorder or difference adversely impacts their educational performance. Demonstrating adverse impact on educational performance can become a tricky endeavor for school-based SLPs, particularly for children with good grades, or when eligibility guidelines are outdated and not informed by current evidence-based practice.

Let’s look at the first issue - when professionals limit “educational performance” to showing discrepancies in performance in academic subject areas. This dilemma has caused ASHA to seek guidance from the Office of Special Education Programs (OSEP) on multiple occasions. Over a span of 30 years, OSEP’s responses (dated 1980, 1989, and 2007) have affirmed that whether a speech and language impairment adversely affects a child’s educational performance cannot be strictly based on discrepancies in age or grade performance in academic subject areas.

An excerpt from one response letter states: “The extent of a child’s mastery of the basic skill of effective oral communication is clearly includable within the standard of ‘educational performance’ set by the regulations – that is, academic failure is not a prerequisite for services. It remains the Department’s position that the term ‘educational performance’ is not limited to academic performance. Services cannot be denied as a matter of policy because the adverse effect on educational performance is not reflected in grades or academic achievement.”

IDEA regulations and OSEP deem educational performance to mean more than grades, therefore, in addition to academic performance, we must look at adverse educational impact in terms of the functional, developmental, social-emotional, and nonacademic needs of the child.

Practical Guidance Summary: Satisfactory academic achievement is not a reason to exclude children from receiving services for stuttering.

How to Gauge Adverse Impact

For a bright child who stutters, the functional, social-emotional, and nonacademic effects of stuttering that adversely affect educational performance may be, for example: 

1. Stuttering draws negative and undue attention to the child.
2. The presence of negative social stigma (e.g., wrong assumptions that the child is nervous, anxious, or less intelligent).
3. Embarrassment and fear of stuttering potentially lead to a lack of classroom participation (e.g., oral presentations, show-and-tell, group discussions, storytelling or retelling, asking and answering questions, requesting information, initiating conversations).
4. Reduced confidence in reading aloud in class or in small group settings due to stuttering.
5. The potential of being bullied, ridiculed, or shunned by peers because of stuttering.

Outdated Eligibility Criteria

Now let’s look at outdated eligibility criteria that place too much weight on disfluency counts. First, in accordance with the long-accepted iceberg analogy of stuttering (Sheehan, 1953; Sheehan, 1998), we have come to understand that the visible aspects of stuttering (i.e., disfluencies themselves and secondary behaviors) are only a small part of the stuttering experience. The invisible aspects of stuttering, such as negative thoughts, feelings, and emotions, and the ways in which these impact a person’s self-perception, confidence, and actions, comprise the much larger part of stuttering. In Diagnosing Stuttering in the School Environment (2002), Michael Susca, professor and stuttering specialist, affirms that the majority of stuttering is unobservable.

Recent research based on the lived experience of individuals who stutter confirms that stuttering encompasses much more than the visible behaviors (Tichenor and Yaruss, 2019). With this understanding, Tichenor and Yaruss (2019) proposed an updated ICF (International Classification of Functioning, Disability and Health) model for the complex experience of stuttering to outline the perceptions and lived experiences of people who stutter. This ICF model presents the sensation of being stuck or losing control as a primary symptom of stuttering, and it also includes the individual’s behavioral, affective, and cognitive reactions and responses as well as activity limitations, participation restrictions, and environmental factors as part of the stuttering experience, all of which may significantly impact quality of life. Furthermore, Tichenor and Yaruss (2019) indicate that frequently perceived behaviors during moments of stuttering, such as the sensation of being stuck, the feeling of loss of control, as well as choosing not to speak or removing oneself from a speaking situation, are difficult to observe from the listener’s perspective. In 2022, Tichenor et al. contended that the primary aspect of stuttering is what the speaker experiences, rather than what the listener sees or hears.

So What Does it all Mean for Evaluation and Eligibility?

Susca (2002) suggests that asking key questions “may reveal the presence of a stuttering disorder without the presence of observable symptoms.” Susca also states that a standardized diagnostic assessment alone is “insufficient and in direct violation of the intent of IDEA ’97.” [Currently used: IDEA 2004]. With this in mind, let’s summarize what this means for SLPs in the public schools.

A. Evaluating the “severity” of stuttering for the purpose of diagnosis and determination of eligibility for school-based services cannot be limited to listener perceptions of the frequency of stuttering in a person’s speech.

B. Additionally, the expectation and pressure for fluency often leads individuals who stutter to attempt to hide their stuttering, even from an early age, and these covert tendencies can mask visible stuttering behaviors albeit severe and crippling impact may be present.

C. Therefore, appropriate eligibility determination criteria for services for stuttering should include:

1. Types of disfluencies (i.e., tense-filled repetitions, prolongations, blocks) and avoidance, substitution, or circumlocution of sounds, words, or situations because of speech disfluencies (Susca, 2002).
2. Behavioral, affective (i.e., feelings, emotions, attitudes), and cognitive reactions and responses to disruptions in fluency.
3. Maladaptive coping behaviors (e.g., silence, self/social isolation, avoidance of situations and people, escape behavior due to stuttering).
4. Activity limitations and restrictions impacting speaking, conversing, discussing, forming relationships, interacting, and participating (note: applies to both academic and extracurricular activities).
5. Overall impact on quality of life (Yaruss & Quesal, 2006, 2016).

A wise man once said, “Not everything that counts can be counted, and not everything that can be counted counts.” If we as professionals only consider disfluency counts and erroneously ignore the entire condition of stuttering, potential outcomes for the child who stutters may be: 1) reinforcement of their fear of talking and fear of stuttering; 2) reinforcement of avoidance of words, people, and situations; 3) limited social skills and interaction with others; and 4) lowered educational achievement due to avoidances and participation restrictions.

It is up to us to challenge and work to change outdated and inappropriate eligibility guidelines that do not account for the entire stuttering experience. It may not be easy, but it will certainly be worth it because children who stutter deserve better!

References

Sheehan, J. G. (1953). Theory and treatment of stuttering as an approach-avoidance conflict. The Journal of Psychology, 36, 27-49. 

Sheehan, J. G. (1998). Message to a stutterer. In Advice to those who stutter (2nd ed., pp. 31-35). The Stuttering Foundation.

Susca, M. (2002). Diagnosing stuttering in the school environment. All Faculty Scholarship, 43, 165-171.

Tichenor, S. E., Herring, C., & Yaruss, J. S. (2022). Understanding the speaker's experience of stuttering can improve stuttering therapy. Topics in Language Disorders, 42(1), 57-75.

Tichenor, S. E., & Yaruss, J. S. (2019). Stuttering as defined by adults who stutter. Journal of Speech, Language, and Hearing Research, 62(12), 4356-4369.

Yaruss, J. S., & Quesal, R. W. (2006). Overall Assessment of the Speaker's Experience of Stuttering (OASES): Documenting multiple outcomes in stuttering treatment. Journal of Fluency Disorders, 31(2), 90–115.

Yaruss, J. S., & Quesal, R. W. (2016). Overall Assessment of the Speaker's Experience of Stuttering (OASES). Stuttering Therapy Resources.

STR Note: An article in LSHSS provides insight and case studies that include discussions of challenging outdated eligibility criteria in the public schools.  You can find it here: 

Reeves, N. A., Flynn, T. W., & Schuff, R. Z. (2023). Ableism to empowerment: Navigating school structures when working with students who stutter. Language, Speech, and Hearing Services in Schools, 54(1), 8–26. https://doi.org/10.1044/2022_LSHSS-22-00026