Impacts of Severe Communication Disabilities on Individuals

Severe communication impairments can affect every aspect of an individual’s life: self-perception, independence, access to health care, and all the other routine activities of daily living that individuals without communication impairments can take for granted. Most importantly, these adverse impacts are as unnecessary as they are severe: because of the existence of AAC interventions, including AAC devices. This Section describes the significant role that AAC interventions, including AAC devices, have within the array of techniques available to treat severe communication disabilities.

AAC interventions are generally recognized as an essential, invaluable, treatment methodology for individuals with severe communication disabilities. This conclusion is based on the half-century long, generally accepted recognition by speech-language pathologists, neuroscience researchers, and the public at large, that the ability to speak and use language is the functional ability that distinguishes human beings from all other species. (e.g., M. Fisher, 1956; M. Batshaw and Y. Perret, 1986; ASHA, 1991; USSAAC, 1991, S. Pinker, 1994; D. Bickerton, 1995; J. Light, 1997; J. Wilford, 1998). The federal Courts also recognize the fundamental importance of the ability to communicate, uniformly holding that state Medicaid programs must cover and provide AAC devices, because the ability to speak is "vital," and that the loss of the ability to speak is the most devastating aspect of any disability. (Fred C. v. Texas Health & Human Services Commission, 1996, 1997; Hunter v. Chiles, 1996).

The latter conclusion adopted by the Courts is based on the statements of Ruth Sienkiewicz-Mercer. Ms. Sienkiewicz-Mercer is an adult with cerebral palsy and severe dysarthria, who was one of the first individuals provided access to an electronic AAC device. That device was made available to her in 1971, by Howard Shane, Ph.D., one of the speech-language pathologists who contributed to the preparation of this Formal Request. Ms. Sienkiewicz-Mercer has stated:

Without a doubt, my inability to speak has been the single most devastating aspect of my handicap. If I were granted one wish and one wish only, I would not hesitate for an instant to request that I be able to talk, if only for one day, or even one hour.

(R. Sienkiewicz-Mercer and S. Kaplan, 1989).

Other individuals who have been provided access to AAC devices describe their ability to communicate as a way to retain their human-ness. Rick Creech, an adult with cerebral palsy, has stated:

[When a person who is unable to communicate is among other people,] people [will be] talking behind, beside, around, over, under through and even for you. But never with you. You are ignored until you feel like a piece of furniture.

(Musselwhite and St. Louis, 1988).

Doreen Joseph, who lost her speech following an accident, expresses a similar thought:

Speech is the most important thing we have. It makes us a person and not a thing. No one should ever have to be a "thing."

(Joseph, 1986).

Jean Dominique-Bauby, the former editor of the fashion magazine Elle, who lost his ability to speak and developed locked-in syndrome following a severe stroke, wrote with the aid of a crude eye-gaze device:

"On June 8, it will be six months since my new life began." . . . Those were the first words of the first mailing of my monthly letter . . . [T]hat first bulletin caused a mild stir and repaired some of the damage caused by rumor. . . . The gossipers [in Paris had] left no doubt that henceforth I belonged on a vegetable stall and not to the human race. . . . [In response,] I would have to rely on myself if I wanted to prove that my IQ was still higher than a turnip’s.

(Bauby, 1997).

Beukelman and Mirenda, in their treatise on AAC, wrote: "clearly, someone who has not ‘been there’ cannot understand the experience of having a severe communication disorder." (D. Beukelman and P. Mirenda, 1998). An earlier article explained why this statement is true:

For the normal adult who has spoken without difficulty since early childhood, the prospect of being unable to communicate through natural speech is incomprehensible. Efficient communication with colleagues, family, and friends is taken for granted.

(D. Beukelman and K. Garrett, 1988).

Historically, the life experiences of individuals with severe communication disabilities -- who lack the ability to use this distinctly human ability -- were characterized by extraordinary hardships. Indeed, the existence of these endemic adverse impacts have driven the development of AAC interventions, from their emergence as a speech-language pathology discipline in the late 1950’s and early 1960’s, to the leading edge of research, today. AAC interventions were first invented and implemented because pioneering speech-language pathologists and rehabilitation engineers refused to believe that ‘nothing could be done’ for people with severe communication disabilities and severe physical disabilities who were unable to benefit from traditional forms of treatment. (Zangari, Lloyd & Vicker, 1994). That same force is driving leading-edge AAC research teams. Among the research now being conducted are experiments with neuro-trophic implants that will enable individuals with severe ALS or other similar conditions to communicate by creating a direct link between the individual’s brain and a computer-based AAC device. (NeuroReport, 1998, S. Robinson, 1999).

One person who faced risks of extraordinary hardships is Stephen Hawking, the world-renowned physicist who has ALS, and who is perhaps the world’s best known AAC device user. (J.Wilford, 1998). In mid-1985, Dr. Hawking was a physicist well known only to a small community of scientists. After he lost the ability to speak due to a tracheotomy, he was extraordinarily restricted in his ability to communicate. As he later explained it, through the use of an AAC device:

For a time, the only way I could communicate was to spell out words letter by letter, by raising my eyebrows when someone pointed to the right letter on a spelling card. It is pretty difficult to carry on a conversation like that, let alone write a scientific paper.

(S. Hawking, 1995). In late 1985, however, Dr. Hawking was provided with a synthesized speech, computer-based AAC device. A biographer described the impact of the AAC device as follows:

[The AAC device] completely transformed his life. [Hawking] could now communicate better than he could before the [tracheotomy] operation, and he no longer needed the help of an interpreter when lecturing or simply conversing with people.

(M. White & J. Gribben, 1992). With this AAC device, Dr. Hawking was able to complete A Brief History of Time (1988), which catapulted him to international fame.

The experiences of other individuals with severe communication disabilities, who, in the absence of AAC devices, were unable to control even the most mundane aspects of life, and who risked, or who actually experienced extraordinary harm and hardships reinforce the urgency and the importance of AAC interventions. For example, Dr. James Hall, a renowned psychiatrist, faced life-threatening circumstances immediately after developing locked-in-syndrome following a severe stroke. Initially, he was able to communicate only by blinking his eyes. Shortly after his stroke, he was asked whether, due to his condition, he wanted medical treatment to continue. The question however, was phrased incorrectly: one blink for "yes," two for "no." An involuntary twitch, causing a second blink, almost cost Dr. Hall his life. Fortunately, the questioner recognized his error and asked the question again, reversing the meaning of the responses. Dr. Hall, who now uses an AAC device, has returned to the practice of medicine. (D. Wedemeyer, 1996)

A far more typical impact of severe communication disability is the creation of a secondary impairment, aptly called a "cloak of incompetence," and described as the "heaviest burden Americans with significant speech disabilities have always faced." (UCPA, 1992).

Americans with significant speech disabilities routinely experience isolation, discrimination, illiteracy, institutionalization, unemployment, poverty and despair. Due to the lack of understandable speech, these individuals are perceived to be unable to direct their own lives; a perception that often leads to an erosion or outright deprivation of their most basic civil rights and liberties.

(UCPA, 1992).

Extraordinary adverse impacts of this "cloak of incompetence" were felt by Ruth Sienkiewicz-Mercer, who has cerebral palsy, and Julia Tavalaro, who had a severe stroke as a young adult. Each had years of their lives stolen while they were unnecessarily warehoused in public institutions, and where they experienced sustained abuse and neglect. In Ms. Tavalaro’s case, caregivers believed she was brain dead and for six years she remained in the back ward of a public institution where she had no input into any aspect of her life. She finally was approached as an intelligent person and examined by Arlene Kraat, a speech-language pathologist who was the President of the International Society for Augmentative and Alternative Communication in 1991-1992, and who has volunteered to be an advisor on Medicare AAC claims. (See Appendix I at Tab C). Ms. Tavalaro later described her reaction to her first encounter with Ms. Kraat:

This is no dream: I’m actually being spoken to. . . . For the first time in six years, I feel whole. . . . I raise my eyes for yes, hardly able to believe that someone is asking permission before she does something to me.

(J. Tavalaro and R. Tayson, 1997). Ms. Tavalaro, who now uses an AAC device, has become an accomplished poet and published author. (D. Martin, 1991; E. Sandberg-Diment, 1992; J. Tavalaro and R. Tayson, 1997). With an AAC device, Ms. Sienkiewicz-Mercer also has become a published author, has married, and was the leading advocate for the successful closure of the institution where she was forced to remain for 16 years. (Sienkiewicz-Mercer and Kaplan, 1989).

For many other individuals with severe communication disabilities, the adverse impacts of their inability to communicate have ranged from the inability to obtain medical care and unnecessary delays in access to care, to severe physical injuries. For example, one Ohio physician described his difficulty obtaining information from his patient as follows:

Current inability to communicate has greatly limited his access to medical care and indeed has reduced it to approximately veterinary proportions.

(Ohio Dept. of Human Services, 1988).

In April 1967, an attendant accidentally injured Ruth Sienkiewicz-Mercer. For hours she was untreated because the staff at the public institution did not understand that she was in pain. She was eventually treated for a broken leg, but she was unable to communicate to her doctors and nurses that she felt pain in her hip as well:

I tried to tell the doctors and nurses about it, but I couldn’t communicate with them. Nobody told them about my facial signals. The nurses didn’t know if I was deaf, dumb, or what. The nicer ones spoke to me slowly and loudly, as if this would make it easier for me to understand them. I wanted to tell them that English was my native language and I understood them very well, but I couldn’t get that message across. The nurses kept telling each other "I guess that she doesn’t understand us" while I was flashing my yes expression so hard that my face hurt.

Medical professionals did not discover Ms. Sienkiewicz-Mercer’s hip problem until October 1969, more than two years later. (Saideman, 1989).

For Andrew Szczygiel, a Central New York youth with cerebral palsy, the consequences of the inability to communicate was outrageous, yet wholly unnecessary injury. As reported by his speech-language pathologist:

Andrew has a burn scar on his hand, which occurred because he couldn’t tell his attendants at school that they had pushed him up against a radiator and locked his wheelchair wheels in a position where his hand was trapped to sear until the flesh melted off.

(J. Frumkin, 1995).

These may be some of the worst case scenarios of the harm that can arise from the lack of an ability to communicate, but the adverse impacts of a severe communication disability go far beyond these discrete examples. All too common are reports of broken bones that were not discovered for days (In re: Keith C., 1991); infections that were not identified and treated until they had become extremely severe (In re: Anonymous, 1988); and sources of pain that were not localized and timely addressed (In re: Shannon, 1990). Indeed, for some individuals, the frustrations associated with the inability to communicate may rise to the level of a mental health impairment, which requires treatment. (Crawford, 1987).

These adverse impacts still do not provide a complete picture. The broadest perspective of life with a severe communication impairment is best illustrated by examining the growing body of first-hand accounts by individuals who use AAC devices.

The perspective of these individuals is perhaps best captured by the following statement by a young attorney who was unable to speak due to ALS:

When I first realized that I would be unable to speak someday, I viewed it as losing my life. Communication was my life. Now, I realize that was a little overly dramatic, but not much. Speechlessness is not a loss of life, but a loss of access to life . . ..

(D. Beukelman and K. Garrett, 1988). For this man, the access to life he lost was to his friends, both to their friendly conversations and intellectual debates. By use of an AAC device, however, that access was restored.

For Celia Cooper, who was a homemaker, and who developed anarthria due to ALS, the loss of access to life was the ability to interact with her husband of 55 years and with her siblings, children and grandchildren, to take care of her personal needs and health care, to maintain her home and maintain social contacts. The loss of speech was profoundly disrupting to her role and responsibilities in her family and profoundly isolating, both to her and to her husband. Indeed, Mrs. Cooper’s anarthria precluded the very speech -- about home, family, health and social matters -- that researchers have established is typical of the conversations of older women. (Stuart, Vanderhoof & Beukelman, 1993). Mrs. Cooper subsequently was able to restore some of these functional abilities when she obtained an AAC device.

Similarly, Emyln Jones, an adult who had a stroke, described -- through use of his synthesized speech computer-based AAC device -- the extent to which the AAC device enabled him to regain "access to life." He reported that he had regained 95 percent of his pre-stroke vocabulary, and that his AAC device

had opened up his life to express himself, and that he had regained up to 95 percent of his pre-stroke vocabulary . . . . My [AAC device] has opened up my life again by allowing me to express my thoughts coherently to myself and others. . . . Although the typing process is slow and laborious for me, the joy of expression and communication is unsurpassed.

Mr. Jones was the first Medicare beneficiary known to have had an AAC device claim approved by a Medicare Administrative Law Judge. In his decision approving the claim, the ALJ observed:

His introduction to the [AAC device] and subsequent learning of the device has resurrected to a great measure his ability to communicate and become much more functional to the extent that he can maintain greater independent living. . . . There is no question, given the evidence, that the [AAC device] has restored and improved his life . . . Without this device, as the evidence points out, the claimant’s life would continue to be severely restricted and his ability to enjoy the fruits of life would not be available.

(In re: Emyln J., 1993).

Jean Dominique-Bauby, who never had access to an electronic, voice-output AAC device, but who instead relied on a very taxing, manual, eye-gaze system, provides -- in this context -- an even more powerful statement about the importance of access to an AAC intervention:

The identity badge pinned to Sandrine’s white tunic says "Speech Therapist," but it should read "Guardian Angel." She is the one who set up the communication code without which I would be cut off from the world.

(Bauby, 1997).

In conclusion, the first principle in the Hippocratic oath is to "prescribe regimen for the good of my patients according to my ability and my judgment." It is on this basis that physicians and allied health professionals, including speech-language pathologists, occupational therapists, and rehabilitation engineers, have worked together for almost four decades, to develop and implement AAC devices and interventions.

At present, the Medicare guidance related to AAC Devices does not recognize either the treatment role, or the value of the benefits provided by AAC devices, as described in this Section and throughout both the professional literature and the expanding body of literature created by AAC device users. Instead, that guidance describes AAC Devices as "convenience items." However, based on the foregoing, it is clear that the ability to communicate is not a matter of convenience to individuals with severe communication disabilities, to the professionals who provide -- or who try to provide -- treatment to these individuals, or to anyone else. Indeed, Medicare’s own coverage criteria contradict the conclusion that the ability to communicate, even with the aid of a speech-related device, is a convenience. Medicare’s coverage of speech language pathology services, of laryngoplasty surgical procedures, and of the artificial larynx, Ultra Voice, and tracheostomy speaking valves, demonstrate that the ability to communicate, even with the aid of a speech-device, is reasonable and necessary medical care, and appropriate for Medicare reimbursement.

Medicare’s speech-language pathology services guidance appropriately describes the purpose of all of these services as enabling individuals to achieve "optimum communication independence," based on functional goals that will "have a positive effect on the quality of the patient’s everyday functions." (MIM, § 3905.3(A); MHM, § 446(a)(1)(A)). These goals are no different than those set for an individual with communication impairments so severe that AAC devices are required. As explained in Section 3 of this Formal Request, the differences between providing speech-language pathology treatment intended to improve natural speech and AAC devices is only a matter of treatment methodology, not treatment goal. AAC Devices are a treatment technique that will allow individuals for whom natural speech treatment techniques will not be successful to achieve those same functional goals. Thus, whether to ensure the humanity of individuals with severe disabilities, to protect their access to life, to remove effects of the "cloak of incompetence," to provide timely and effective treatment, or to prevent unnecessary harm, AAC devices and interventions should be recognized by Medicare as an effective and often the only possible form of treatment that will provide meaningful benefit.