The High Cost of Stuttering Insurance regulations impose huge barriers to stuttering treatment, even in university clinics. From My Perspective
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From My Perspective  |   July 01, 2016
The High Cost of Stuttering
Author Notes
  • Patricia M. Zebrowski, PhD, CCC-SLP, is a professor in the Department of Communication Sciences and Disorders and director of the Stuttering Research Lab at the University of Iowa. She is an affiliate of ASHA Special Interest Group 4, Fluency and Fluency Disorders. tricia-zebrowski@uiowa.edu
    Patricia M. Zebrowski, PhD, CCC-SLP, is a professor in the Department of Communication Sciences and Disorders and director of the Stuttering Research Lab at the University of Iowa. She is an affiliate of ASHA Special Interest Group 4, Fluency and Fluency Disorders. tricia-zebrowski@uiowa.edu×
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Speech, Voice & Prosodic Disorders / Fluency Disorders / Professional Issues & Training / Regulatory, Legislative & Advocacy / From My Perspective
From My Perspective   |   July 01, 2016
The High Cost of Stuttering
The ASHA Leader, July 2016, Vol. 21, 6-7. doi:10.1044/leader.FMP.21072016.6
The ASHA Leader, July 2016, Vol. 21, 6-7. doi:10.1044/leader.FMP.21072016.6
The winner of the 2016 Academy Award for best short live-action film was “Stutterer,” a lovely and devastating 12-minute tour of the experience of someone whose rich and expressive interior world is hidden, leaving what is known about him up to the imagination of others. The film’s protagonist is a young man named Greenwood whose drive to hide his stuttering—not the stuttering itself—is the major theme. The results are consequential, and while I suspect the ending will fill some viewers with admiration for Greenwood’s ingenuity, it is not happy. I left the theater feeling profoundly sad.
In more than 30 years as a specialist in stuttering, I have seen a lot of things that people like Greenwood do to hide their stuttering: speaking with a foreign accent, changing words, pausing while “fake thinking” (as one little boy explained it to me) or tapping a foot—one syllable or word per tap—to generate an inner metronome. Young children sometimes cover their mouths with their hands when they stutter.
Early one fall an incoming freshman named Ben showed up at our clinic wearing headphones with a dangling, unplugged cord. Here was a smart, healthy young man just entering college, full of possibility—and so afraid of stuttering that he wore headphones almost all day so people wouldn’t talk to him and he wouldn’t have to respond. Ben and I worked together for more than two years, and through a combination of his motivation and grit and my expertise, he found his voice.
Ben and Greenwood share stories of deep disconnection. Other people who stutter share a different—but no less urgent—disconnect when they seek help, because although help is available, economic and bureaucratic obstacles make it difficult to access.
A social toll
Chronic stuttering can have pervasive negative consequences. Research has consistently shown that people who stutter are more likely to be perceived by others as less intelligent, less socially competent and more anxious than typically speaking people. Children who stutter are more likely to be teased and bullied, and the risk of developing social anxiety and self-stigma is higher for people of all ages who stutter.
Stuttering is associated with less satisfying personal relationships, lower educational attainment, underemployment and reduced earnings. A recent labor market analysis I conducted with my University of Iowa colleagues Hope Gerlach and Anu Subramanian and Purdue University doctoral student Evan Totty found that people who stutter are less likely to be employed, more likely to be on public assistance, and earn 21 percent less than people who do not stutter. Of this 21-percentage-point differential, roughly six percentage points are attributable to differences in occupation, six to differences in education, six to discrimination, and three to self-stigma—the belief of people who stutter that they are less suitable for various jobs.
A reimbursement dilemma
Effective treatment for stuttering requires therapy, not procedure, and this is no small matter when it comes to time, cost and clinician skill. Stuttering therapy typically requires a combined focus on speech behaviors, thoughts and emotional reactions, and durable changes can take up to two years to achieve at upward of $100 per hour for a weekly session. This price tag is similar to, and in many cases less than, other habilitative and rehabilitative therapies, including physical therapy, occupational therapy and mental health therapy.
But here’s where the similarities end. First, the complex nature of stuttering typically means that effective treatment requires a relatively long-term commitment. Second, the top insurance providers in the U.S., including Medicare and Medicaid, cover physical therapy, occupational therapy and mental health therapy for medical necessity or developmental disorders—but speech therapy is covered only if it is deemed “medically necessary” (meaning that the disorder is secondary to injury, illness or disease). Of course, there are speech and language disorders that fit this definition (for example, apraxia, aphasia, various voice and swallowing problems), but developmental stuttering is not one of them, although research has emerged suggesting differences in brain structure and function between people who do and do not stutter. Still, these differences are not the result of illness, injury or disease, meaning that for many people who stutter, health insurance coverage for therapy is nonexistent or denied.
Over the years, steady but very slow progress toward change in insurance coverage has been made through consumer advocacy work led by ASHA, the Stuttering Foundation and the National Stuttering Association. Much of this work has led to the development of effective appeal processes, but getting the needle to move in the number of insurance carriers that cover stuttering therapy remains challenging at best.

People who stutter are less likely to be employed, more likely to be on public assistance, and earn 21 percent less than people who do not stutter.

Safety net? Or not?
Historically, people who stutter have found a reliable safety net in the insurance crunch in the university clinic. College and university speech and hearing clinics whose primary purpose is to train graduate students in speech-language pathology while providing a service have long been a stronghold for providing quality, affordable stuttering therapy. These clinics offer fee waivers to clients because they ensure that students have access to people with diverse speech, language and hearing disorders, including stuttering. The clients, in return, receive high-quality, affordable treatment under the watchful supervision of experts in the field.
But here’s the rub: Training waivers and fee reductions are allowed only if the clinic chooses not to bill the nation’s two primary insurance providers—Medicare and Medicaid—who stipulate that health care facilities must bill all clients and patients the same, regardless of their insurance status. At face value this policy makes sense: Why should the government pay higher fees for services than non-insured or privately insured people?
University clinics, therefore, must choose: Accept all clients, including Medicare and Medicaid beneficiaries, and charge everyone; or decline all Medicare and Medicaid clients to be able to provide treatment at low or no cost. Few, if any, clinics choose to decline services to specific populations.
So, the time needed for people who stutter to make a change in the way they manage their stuttering, and the cost of therapy—coupled with the insurance doughnut hole for stuttering and other conditions—means that children and adults who stutter are often left without access to treatment they can afford.
The result is that clients who aren’t covered by Medicare or Medicaid (most) and who don’t fit the criteria for coverage from their private carrier (most) pay the same rate charged to those patients who receive “medically necessary” therapy, and all of it is out-of-pocket. This scenario has played out in my own university clinic, where a combination of shrinking budgets, increasing costs (arguably due to added layers of administration), consumer demand from those with insurance coverage, and a general move in higher education toward a business model of operation has increased the pressure to bill health insurance for therapy.
Along with increased therapy rates in general and the elimination of training waivers, even for our own university students (because doing so is noncompliant with Medicare and Medicaid rules), we have seen a reduction in our caseload of people who stutter, even though the number of people seeking help has not decreased and even though we offer a generous sliding fee scale and flexible treatment options.
The irony for me is that the University of Iowa, where I have spent my career training students to provide stuttering therapy, is also the place where stuttering research and treatment in the United States began. Our clinical program for children and adults who stutter is one of the oldest continuing providers of stuttering therapy in the nation. So, here we sit, specialists in stuttering and stuttering therapy, with bright, enthusiastic and dedicated graduate students who want to learn how to help people who stutter, wondering if we’ll be able to give either group what they want and need.
I see no easy solution for anyone this situation affects: the people who stutter who have relied on university clinics, graduate student clinicians, or the faculty and clinical programs that have served both so well.
Today’s graduate students need to learn about the realities of health care provision, including the intricacies of insurance billing, authorization requirements, documentation, denial appeals and the dozens of other administrative responsibilities that accompany clinical care. But as we teach them how to navigate this world, my hope is that we show our students by our words and actions that all of these are secondary to the work at hand. When we lead this way, we create a culture where best practices take center stage, and our students become clinicians who are guided by best practices as they embrace their responsibility to educate bureaucrats, hold insurance companies accountable, sit at the table in developing and pushing changes in policy, and advocate for people who stutter.
1 Comment
July 2, 2016
Robert Quesal
Great article and grim reality
This is an outstanding article. The Medicine/Medicaid dilemma falls under the heading of "government making our lives better." It's truly sad when university clinics are unable to fulfill one of their historic missions - providing services to those who cannot afford them - because of government regulations.
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July 2016
Volume 21, Issue 7