There are two types of foundations:[ref]Fleishman, Joel. The Foundation: How Private Wealth is Changing the World. 2009: ISBN 978-1-58648-702-7, pages 60, 84, and 109. See also page 130.[/ref]
- A catalyst foundation works on “a problem for which a strategy is inconceivable, inappropriate, or premature…without specifying or expecting particular outcomes.” A catalyst foundation provides expressive giving that “reflects a donor’s desire to show support for a cause without necessarily expecting to achieve a noticeable impact.”
- A driver foundation works on “a particular social, economic, or cultural goal [that] can be visualized clearly and a practical strategy can be developed to attain it…the foundation itself maps out and directs the change effort.” A driver foundation provides instrumental giving that “is focused on achieving a particular policy objective and intended to accomplish a significant impact on a specified social problem.”
Malcolm Fraser founded the Stuttering Foundation in 1947 as a catalyst foundation, at a time when nothing could be done about stuttering. But 66 years later, stuttering has effective treatments. It’s time for the Stuttering Foundation to get into the driver’s seat and focus on specific goals.
a rich foundation, with high aspirations for effecting social change, that is a generation or two removed from the founder’s vision must be especially careful about maintaining its fidelity to that vision—and that means redoubling its dedication to instrumental giving—giving aimed at achieving consequences of high social benefit—rather than merely expressive charity.[ref]Fleishman, Joel. The Foundation: How Private Wealth is Changing the World. 2009: ISBN 978-1-58648-702-7, page 109-110.[/ref]
Reduce Stuttering 50% in Five Years
Consider the first two sentences of the Bill and Melinda Gates Foundation website:
There are safe, effective, and affordable tools to prevent and treat malaria. Between 2000 and 2006, several countries in Africa saw a 50 percent decrease in malaria by using a combined set of effective interventions, including insecticide-treated bed nets and indoor spraying of homes with insecticides to control mosquitoes, and drug treatments to prevent and cure malaria.
In 57 words, consumers learn that there are effective treatments for malaria, what some of these treatments are, and that the Bill and Melinda Gates Foundation has reduced the prevalence of malaria 50% in six years.
Stuttering is easier to treat than malaria.[ref]Malaria is considered to be one of the most difficult diseases to treat. 3 reasons we still haven’t gotten rid of malaria.[/ref] Reducing the prevalence of stuttering 50% in five years is an attainable goal.
Support Effective, Evidence-Based Stuttering Treatments
The Stuttering Foundation supports two stuttering treatments:
- For preschool children who stutter, indirect therapy (also called parent counseling).
- For school-age children, teenagers, and adults, stuttering modification therapy.
Both treatments were developed in the 1930s and 1940s. Indirect therapy has been found ineffective in nineteen studies and three literature reviews. [ref]Nippold (1995) Parents’ Speech and Children’s Stuttering. JSHR, 38:978-989.
Kelly (1994) Speech rates and turn-taking behaviors of children who stutter and their fathers. JSHR, 37:1284-1294.
Kloth (1995) Communicative Behavior of Mothers of Stuttering and Nonstuttering High-Risk Children. JFD, 20:365-377.
Howell (1997) “The Effects of Formal and Casual Interview Styles on Stuttering Incidence,” in Speech Production. ISBN 044482460X.
Rommel (1997) “Linguistic Aspects of Stuttering In Childhood,” in Speech Production. ISBN 044482460X.
Yairi (2005) Early Childhood Stuttering (ISBN 89079-985-7), 167.
Yaruss (1995) “Mother and Child Speaking Rates and Utterance Lengths in Adjacent Fluent Utterances,” JFD, 20:257-278.
Yaruss (1997) “Utterance Timing and Childhood Stuttering,” JFD, 22:263-286.
Bloodstein (2007) Handbook on Stuttering (ISBN 141804203X), 364-366. [/ref] Stuttering modification therapy has also been found ineffective.[ref]Blomgren (2005) Intensive Stuttering Modification Therapy. JSLHR, 48:509-523. Ryan, 49:1412-1414. Reitzes, 49:1420-1422. Bloodstein (2007) Handbook on Stuttering (ISBN 141804203X), 386-387.[/ref] The Stuttering Foundation should instead support modern, effective, evidence-based stuttering treatments.
Eight systematic reviews and literature reviews have been published in recent years, clearly showing which stuttering treatments are effective. These reviews are difficult for clinicians and consumers to find and understand. Only a handful of stuttering treatments have been proven effective. These treatments aren’t rocket science; a short guide in plain language can explain to clinicians and consumers what stuttering treatments are effective. I wrote such a guide, entitled What Stuttering Treatments Are Effective?.
Here are some ways that the Stuttering Foundation could provide information about effective stuttering treatments:
- Publish newsletter articles about stuttering treatments. A search of the last ten years of the Stuttering Foundation newsletter found no articles about evidence-based stuttering treatments.
- Develop online learning courses educating clinicians how to practice evidence-based treatments. Speech-language pathologists could get their CEUs and then be listed in the therapy referrals as certified to practice that treatment.
- The Stuttering Foundation could develop materials enabling consumers to do evidence-based self-therapy. Online learning courses and smartphone apps could help these consumers, just as Self-Therapy for the Stutterer, by Malcolm Fraser, did when it was published thirty-five years ago.
Awareness Isn’t Information
Susan G. Komen for the Cure has been criticized for spending only 16% of its budget on cancer research, and spending the bulk of its budget on “public education” of ideas that are decades out of date, and on “awareness” campaigns that have no apparent impact on cancer.
the function of pink-ribbon culture has become less about eradication of breast cancer than self-perpetuation: maintaining the visibility of the disease and keeping the funds rolling in.[ref]Orenstein (2013) Our Feel-Good War on Breast Cancer. New York Times Magazine, April 25.[/ref]
Like the Komen Foundation, the Stuttering Foundation spends much of its budget (28% in 2011) on raising public awareness of stuttering, and more of its budget (36% in 2011) producing publications that promote a narrative about stuttering that hasn’t kept up with the scientific knowledge.
Unlike many medical charities, the Stuttering Foundation doesn’t provide grants to researchers. This is unfortunate, as almost no stuttering treatment research is being done in the United States, due to the length, complexity, and cost of stuttering treatment research as compared to etiology research or social research (e.g., bullying).
However, the Stuttering Foundation could provide non-monetary support for treatment research:
- Provide a database for stutterers to volunteer for studies.
- Set up a project on Amazon’s Mechanical Turk for volunteers to code speech samples. This would eliminate one of the biggest expenses in stuttering research. It would also support clinicians to collect data, to judge whether a treatment is effective for an individual client.
- Help researchers design studies and write grant proposals. Stuttering researchers are typically lone graduate students who compete for grants against teams of professional researchers in other fields; the stuttering researchers look like amateurs in comparison.
- Gordon Rugg, a British psychologist, developed the verifier method to highlight missing or unexplored questions in a field, identifying “low-hanging fruit” ripe for picking. The Stuttering Foundation could commission a verifier study to identify the areas (both etiology and treatment) where breakthroughs are most likely to be found.
The Stuttering Foundation hosts two workshops for speech-language pathologists each year. How about some workshops for consumers about evidence-based stuttering treatments? State speech-language pathology conventions are typically Fridays and Saturdays; the Stuttering Foundation staff could stay over Sundays to host workshops for consumers (and clinicians) to learn about and try different options for effective stuttering treatments.
Seeing how similar problems are solved in other fields will spark advances in stuttering treatment. The Stuttering Foundation could sponsor a cross-disciplinary conference inviting:
- Other dopaminergic disorders, including Tourette’s syndrome and obsessive-compulsive disorder. (These are disorders in which symptoms are triggered by stress, and the harder you try not to a symptom the more you are compelled to do it.) How do people with Tourette’s and OCD handle stressful situations?
- Other fields of motor learning and control, including occupational therapy, physical therapy, and sports coaching. How do these fields teach new motor skills, and then make these motor skills automatic and effortless?
- Other disorders that include an auditory processing dysfunction, including dyslexia. How do these fields treat auditory processing dysfunction?
- Treatments for psychological disorders common in stutterers, such as social phobia. How do psychologists treat social anxiety disorder?
Third-Party Funding for Stuttering Treatment
Ability to pay should never be an issue in stuttering treatment. Most Americans who stutter qualify for free or subsidized treatment. Yet figuring out how to get this funding can be challenging. The Stuttering Foundation has a webpage about insurance coverage but this should be expanded to include other third-party funding for stuttering treatment, such as vocational rehab programs, the Veteran’s Administration, state special telephone equipment distribution programs, the Americans with Disabilities Act, and service clubs such the Lions.
A Modern Website
The Stuttering Foundation website received 45 million visits in 2011. It printed 500,000 books and brochures, answered 24,000 calls, and trained 41 speech-language pathologists. These statistics suggest that 99% of consumer contacts are via the website. Improvements to the website are the most cost-effective way to reach consumers and clinicians.
With more than 900 pages, visitors to the Stuttering Foundation website can read for hours. However, the average websurfer spends less than a minute on a website. Web users want to find information in seconds. The Stuttering Foundation website lacks a “search” box or sitemap. The homepage has one-click access to only 36 pages, 27 of which are in a menu above the logo, where few users look. The other 800+ pages are in unorganized lists of “Related Pages.” The lists aren’t organized into “Stuttering Treatments,” “Stuttering Information,” “Stutterers’ Life Experiences,” etc. Many link titles are unclear, e.g., “Did You Know?”
The website has five videos, between 11 and 53 minutes long. Web surfers prefer short videos and animations. A lot of information can be presented in a minute.
The Stuttering Foundation website has eight downloadable e-books. I counted 30 books and 59 DVDs for sale. Why isn’t every book and video downloadable? 36% of the Stuttering Foundation’s budget could be eliminated if it stopped printing, warehousing, and shipping books. If 10% of website visitors downloaded an e-book, this would increase the number of books and brochures distributed annually ten-fold from 500,000 to 5 million.
Not only does the Stuttering Foundation website lack navigation tools and structures for human visitors, the website lacks the semantic markup that search engines use to understand what information is on a website.
And how about making the Stuttering Foundation interactive? Instead of information flowing in one direction from the Stuttering Foundation to consumers and clinicians, information could flow in both directions:
- Set up an area for consumers to write reviews of stuttering therapy programs they’ve done.
- Set up Amazon-style reviews of the Stuttering Foundation’s books and videos.
- Allow questions and comments on the Stuttering Foundation webpages and Facebook page.
Apply for HONcode certification from the Health On the Net Foundation. This not-for-profit organization certifies that medical websites provide sound, reliable information.
Measure and Test
A well-run foundation tests its programs and measures their effectiveness.
Some measurements are simple and inexpensive, e.g., allowing readers to rate and review Stuttering Foundation books and videos.
Web analytics are increasingly used by non-commercial organizations to measure and increase the effectiveness of their websites.
But how to measure the big picture: reducing the prevalence of stuttering? The Stuttering Foundation could send out an annual e-mail survey asking how many stutterers each speech-language pathologist has on her caseload. By also asking the ages of stuttering clients, what treatments each client is receiving, etc., such a survey could drive a broad-scale effort leading to reduction in stuttering prevalence, as well as advances in the treatment of stuttering.
Until pretty recently the charity world has been about doing stuff that helps, without really thinking, “Well, how much does it help exactly, and how much does it cost?” And there does seem to be this shift that’s happening, a shift away from glossy brochures and smiling children and happy anecdotes, a shift towards data. Philanthropy is getting nerdier.[ref]Kestenbaum (2013) This American Life, 503, http://www.thisamericanlife.org/radio-archives/episode/503/i-was-just-trying-to-help[/ref]