Doing More With Less for People With Aphasia: Creative Responses to Healthcare Change

Candace Vickers, M.S.,CCC-SLP


Speech language pathologists providing therapy services to persons with aphasia in medical settings are confronted today with two seemingly incompatible grim realities: 1) Persons with aphasia often have limited access to rehabilitation due to limited visits allowed by managed care insurances and; 2) third party payers, supervisors and families of persons with aphasia expect ‘functional outcomes’ as a result of treatment regardless of the time frame allowed. At the same time ASHA’s revised Scope of Practice for Speech Language Pathology (May, 2001) now states that the ultimate goal of speech-language therapy intervention is to improve quality of life via increased participation in life.

The call to increasing ‘life participation in aphasia’ was initially sounded by some of the top aphasiologists in the country (Lyon, 1992; Chapey, et al, 2000). Increasing ‘participation in life’ may seem like a lofty task to the average clinician toiling away in a medical setting when, with shorter treatment sessions, the number of patients seen in a day has increased, paperwork has doubled, and obtaining even six to twelve consecutive visits for treatment can require a Herculean effort from clinicians already short on planning time.

Facing up to why it is important to "do more with less"

Doing "more with less" for people with aphasia begins with the SLP’s recognition that months and months of individual speech and language therapy possibly never has necessarily been the road to increased communication opportunities, communication success, and/or participation in life for persons who have aphasia. The profession shares some responsibility in not clearly demonstrating the functional effectiveness of therapy in the typical medical setting under typical conditions. How, for example, can it be suggested that twelve individual therapy sessions are too few, when it has not been fully demonstrated that 40 sessions produced real life meaningful changes in persons’ lives? (Threats, 2002)

One response to the constraints imposed by today’s healthcare system is to do as Roberta Elman has suggested (1999) and provide treatment "outside the box." The "box" that clinicians may need to step out of could be what Jon Lyon (1999) calls the box of ‘reimbursable care’. Both Elman and Lyon are dedicated aphasiologists who actually did step "out of the box" to forge new frontiers in meeting the communication needs of people with aphasia. Elman and her colleagues Bernstein-Ellis and Ewing, left paying jobs as speech language pathologists to begin the Aphasia Center of California in Oakland, which offers group therapy to people with aphasia five days a week without billing third party payers. Lyon partners with community agencies to train "communication partner volunteers" to provide services to people with aphasia through his nonprofit organization, Living with Aphasia. He also provides long term specialized services to couples coping with aphasia that would be unavailable in traditional treatment settings. ( Lyon, 1999) Providing services that empower couples coping with aphasia to learn more efficient communication strategies is to be applauded and hopefully taken up by more speech-language pathologists. For example, Boles (1998, 2000) has reported measurable changes in communicative success for couples who received Solution Focused Aphasia Therapy in the university setting. It is crucial, however, that clinicians in traditional medical settings are also able to show the effectiveness in facilitation of real life functional changes in the lives of those with aphasia. The current reduced treatment time situation for speech-language pathologists is precarious since not achieving functional goals with decreased therapy time could be used to declare that therapy does not really work. The continuing challenge for clinicians providing aphasia therapy in the medical arena will not only be to advocate for patients to receive the appropriate amount of treatment visits, but also to initiate at least beginning guidance for coping with the long term consequences of aphasia on daily life. This process can begin through family education and training in the initial stages of therapy, but will also need to address ensuring that persons with aphasia have access to meaningful communication opportunities such as that provided by participation in group conversation programs that focus on facilitating satisfying interactions with peers and trained volunteers.

Doing more for the person with aphasia during the inpatient phase

Part of ‘doing more with less’ for persons with aphasia who are inpatients in medical settings could be to do as Kagan has suggested, and create an "aphasia friendly infrastructure" (1998b). Actions such as presenting in-services to nursing staff or one’s colleagues in allied disciplines about effective communication skills to use with people with aphasia are a way to begin building this infrastructure. It is even more powerful when timed to coincide with National Aphasia Awareness Week in the month of June. Additional momentum can be gained by working with the volunteer services department of one’s hospital on ways to increase access to special services for inpatients with aphasia. For example, at some hospitals, there are special desks manned by volunteers that offer inpatients the chance to request items like VCR’s, talking books, or special food to be delivered to their hospital rooms. Clinicians can heighten awareness of the fact that hospitalized individuals with aphasia who have difficulty using the telephone or using interrogative questions to request items barely ever access this service due to communication difficulty. They can then work collaboratively with volunteers, nursing, and others to open new avenues of communication for these inpatients to be able to express more choices and access services.

Creative responses from "the trenches" for the outpatient phase

There is an old saying that a crisis is a time of "danger and opportunity" and that is certainly applicable to the situation faced by clinicians desiring to provide quality treatment for people with aphasia. The dangers may come in the form of limited access to treatment due to external forces, but it is the response of clinicians having a passion to make a difference anyway that presents the opportunity for growth and creativity by trying different avenues or methods of treatment or initiating new programs outside of reimbursable care. Although lobbying for adequate individual therapy time is part of what clinicians in medical settings will do out of necessity, proactive responses go beyond arranging for what can occur in the two or three times a week 45 minute therapy session. Clinicians in medical settings who want to help open doors for increased participation in life for people with aphasia, can make a powerful impact when they establish ways to respond to the ongoing communicative needs of persons with aphasia outside of the limited treatment time framework. This impact extends not only to the lives of the persons with aphasia whom they serve, but also on their local healthcare community, such as colleagues in other disciplines, management personnel, students who are provided with field study and service learning opportunities, and community agencies who interact with their facilities.

Tools for raising awareness of needs of persons with aphasia

Clinicians have some powerful tools for helping them to gain support for the notion that persons with aphasia want, need, and deserve ongoing communication participation opportunities. These tools can be found in two places: 1) the ICF framework for rehabilitation as described in the World Health Organization’s new classification system, (WHO, 2001); and: 2) the mission statement or core values of many healthcare institutions where clinicians work. Additional tools for education and advocacy are also available through the National Aphasia Association at www.aphasia.org.

Aphasia treatment in the ICF framework

People with aphasia need increased access to existing services, as well as the ability to receive adequate amounts of rehabilitation services. Clinicians advocating for both of these have a strong ally in the new concepts for rehabilitation provided by The International Classification of Functioning, Disability and Health (World Health Organization, 2001). ICF concepts such as targeting improved participation in life have now been embraced by ASHA in its revised Scope of Practice for Speech-Language Pathology, (ASHA, 2001) and the framework shows promise of inspiring research on all aspects of disability and the disablement process. One of the purposes of any scope of practice is for use with third party payers to demonstrate that services being provided fall within the breadth and recommended practices for a profession. Thus, if asked why spouses are being included in the treatment process for persons with aphasia, one could state that the scope of practice for the field recognizes the environment as an important component to the recovery process. According to Threats (2001), third party payers are studying possible use of the codes for their future healthcare determinations as well. For example, the National Committee of Vital and Health Statistics, a scholarly subcommittee of the Department of Health and Human Services, has made a recommendation to further study the use of the ICF for all federal health reporting forms, including those for Medicare reporting and reimbursement. They state in their report that the functional outcomes of all medical interventions is now considered the most important of all outcomes. Thus, even for something such as determining whether a medication is effective it would have to be shown that there is a functional improvement in patients’ lives, and not only a physiological appropriate reaction to the medication. (NCVHS, 2001)

The attention that will be given to ICF codes in the future has significant ramifications for speech language pathologists providing clinical services to people with aphasia. For example, the specialized codes for activity and participation codes in the ICF offer clinicians in medical settings a meaningful way to identify the range of impacts that aphasia has on participation in communication for virtually every area of life. The same codes can then be used to indicate the changes that have occurred in terms of activity and participation when therapy has ended.

Fulfilling the healthcare mission

Chapey (2001) has written that the ability to communicate through language is part of the ‘human essence’. By validating that a communication disorder can impact every aspect of life, the ICF presents an advocacy tool that clinicians can use to demonstrate that providing services such as conversation groups to persons with aphasia are consistent with the mission statements of the facilities in which they work. For example, this author’s healthcare setting embraces the core values of "dignity, service, justice, and excellence", and rewards its employees yearly for exemplifying those values in interactions with both patients and coworkers. Initiation of innovative programs that promote wellness while also decreasing length of stay and reducing costs are also valued and encouraged.

For example, at St. Jude’s Medical Center in Fullerton, California, the hospital conducts ongoing endeavors in its community to enhance "Healthy Communities". A Community Exercise Group offered five days a week to persons with disabilities, and a Mobile Health Van offering free pediatric services to economically disadvantaged groups are just two examples of these efforts. Ideas such as this may provide a beginning point that can help clinicians create new systems to help persons with aphasia. An illustration of this concept in action would be the founding of Communication Recovery, a group conversation program for persons with aphasia using volunteers in a medical setting. (Vickers, 1998) The author was able to gain support from hospital administration for operating this community group program for persons with aphasia by pointing out that participation in weekly conversation groups with peers is just as crucial for improved well being as physical exercise, and is an expression of the values espoused by the institution. (Vickers, 1999)

The fact that access to individual treatment time is more limited during this time of healthcare change accentuates the urgent need that persons with aphasia and their families learn to do what Lyon has termed "cope with aphasia", (1998) and that this learning to cope needs to occur sooner than later. Clinicians serving persons with aphasia are keenly aware that clients often view termination of individual therapy services as a devastating loss. Many may have been experiencing the most satisfying and least frustrating communication of their day with a therapist who used active listening and was able to follow their messages. When individual therapy cannot continue and this unique communication opportunity ceases, families are often hard pressed to help their loved one with aphasia find and successfully become involved with outlets for communication interaction, as there are many areas of the country where there are no community aphasia groups available. ASHA (1988) has stated that part of the SLP’s ethical responsibility is to offer communication opportunities to the isolated. This mandate also reinforces the need for clinicians to respond to the new curtailed treatment time scenario creatively, by finding ways to be a catalyst of change for the communication world of the person with aphasia. This author’s experience in a medical setting has demonstrated that one clinician can be an instrument of this change and make a difference, even while carrying a full caseload, with no budget for equipment of any kind, and with no outside funding.

Building momentum on behalf of persons with aphasia in the medical setting through use of volunteers

As specialists in the treatment of communicative disorders, speech language pathologists are also uniquely suited to help others such as colleagues in management and administrative positions, recognize the intrinsic value and importance of being able to communicate, and the devastating impact it can have on the individual when this ability is lost or impaired. Clinicians also possess strategic knowledge about how others without the same knowledge of aphasia may be able to engage in satisfying interactions with persons with aphasia when given appropriate training and guidance to do so. This concept was articulated by Lyon (1988) when he created the designation "communication partner" volunteer, and pointed out that the volunteer’s interaction with the person with aphasia has intrinsic value, because it is not seen as obligatory. Lyon trains volunteers to interact with persons with aphasia throughout the week as well as to accompany them in what he terms ‘activities of choice’ in the community. At the Aphasia Institute in Toronto, Kagan and colleagues are able to offer conversation groups and more, to people with aphasia throughout the week, with the help of volunteers who have received extensive training in Supportive Conversation. (Kagan, 1998; Kagan & Cohen-
Schneider, 1998a)

While it is true that most clinicians in medical settings may not be able to offer the variety of options or frequency of conversation groups described above, experience in working with volunteers in Communication Recovery Groups at St. Jude Medical Center since 1994 has shown that the "communication partner volunteer" can play a significant role in partnering with even one speech pathologist in the medical setting. When provided with special education and training in use of techniques such as Written Choice Communication (Garrett & Beukelman, 1992; 1998), volunteers can assist persons with aphasia by engaging them in meaningful interactions under the supervision of the speech language pathologist. While interactions with volunteers do not constitute the experience of having therapy, persons with aphasia can benefit greatly from being able to engage in frequent, enjoyable communication opportunities.

Communication groups for people coping with both recent and chronic aphasia

It is clear that persons with aphasia need ongoing access to participation in meaningful communication situations after discharge from individual therapy, just as they may need chances to perform supervised physical exercise regularly in order to prevent further strokes and rehospitalization due to other complications. It is also clear that clinicians are having to discharge persons with aphasia from individual therapy sooner than in the past due to current healthcare constraints with the result that many with aphasia, and their family members, do not have opportunities to learn to gradually adjust to life with aphasia or receive encouragement or tools to continue moving forward with their lives. By applying some of the ideas and principles described above, clinicians around the country may be able to raise awareness of the needs of people with aphasia in their own unique settings, and initiate communication group programs. By recruiting and training volunteers, as well as partnering with colleagues in other disciplines, it is possible to reach and help more individuals with aphasia than one clinician could do alone, thus making a significant impact on one’s local area.

Volunteerism as a path to involvement as well as increased life participation

The experience of using volunteers in Communication Recovery at St. Jude Medical Center has been found to benefit a wide range of individuals in addition to those with aphasia. The rehab center is strategically located only two miles from California State University, which also offers a master’s program in communicative disorders. Through the last nine years, a steady stream of both undergraduate and graduate students have invested their time and energy into helping persons with aphasia, often for as long as a year, while gaining valuable field experience prior to entering the field. Spouses of persons with aphasia have found meaningful tasks as volunteers in the group program that allowed them to use natural talents and abilities and move beyond the role of caregiver to mutual participant, making new friends and sharing enjoyable life experiences with their spouses with aphasia. Students in other disciplines have also become involved in meaningful ways. For example, recently a student majoring in human services took the author’s Communication and Aging class, decided to volunteer in the program and eventually initiated a bimonthly peer support group for spouses of group members that meets during group sessions.

Interacting with trained volunteers of all ages, both those with and without aphasia, also offers persons with aphasia the advantage of increased communication opportunities and interactions in a naturalistic context, and can provide the sense of belonging that is altered when aphasia makes communicating with one’s prior friends and peers difficult. The purpose of speech-language therapy is to facilitate meaningful verbal and/or nonverbal interactions with significant others rather than with therapists only. Thus, even though a speech-language pathologist may have excellent clinical and personal interaction abilities, he or she is not necessarily similar to a group member’s family and friends. For example, a typical 65-year man would not necessarily be expected to have 25-year old females in his closest circle of friends. In this context, both volunteers with and without aphasia, who share similar backgrounds, experiences and outlooks, and can relate to the current life situations of group members, provide an essential link to increasing the autonomy and communicative success of persons with aphasia. This type of empowerment may impact ability to accept the altered self that comes as a result of aphasia, which in turn can improve interaction in natural environments. (Coles and Eales, 1998) Volunteers who have some residual aphasia and have completed their course of therapy can be powerful role models, and provide valuable interaction for group members in that they demonstrate that: 1) one can live with less than perfect speech and language, 2) a person can still be helpful to others even with a disability, and 3) that people with aphasia can enjoy interaction with others.

Documenting improvement

As with a clinician’s individual therapy, it is important to document how the interventions suggested in this article, such as group therapy using volunteers, benefit the communication interactions of persons with aphasia. Theoretically based systematic documentation of improvement is important for two reasons. One, it can help justify the resources needed to support these activities to the administration at one’s facility. Secondly, the evidence gained from such documentation can contribute to the body of knowledge concerning the effectiveness of interventions for persons with aphasia.

Questionnaires, structured interviews, and systematic direct observation are three methods of obtaining the necessary baseline and subsequent data. The ICF is an excellent theoretical framework as well as a specific coding system to be used by clinicians to guide development of such assessments. The author is currently conducting a retrospective study of the improvement made by persons in her Communication Recovery groups.

Summary

There are several steps clinicians can take to create a positive momentum on behalf of persons with aphasia in medical settings, even in an atmosphere of limited individual clinical services. During the inpatient phase clinicians can raise awareness that persons with aphasia need what the ICF terms "environmental facilitators" (2001) in order to access needed services within the hospital. They can also train and educate families of persons with aphasia about effective communication skills and provide them with resources that they will possibly access once their loved one is out of the hospital.

In the outpatient phase, clinicians may be able to find support for establishing creative programs outside of billable care by showing how: 1) the health and well being of persons with aphasia is enhanced through access to the kind of meaningful communication interactions that can occur in a weekly group therapy program, and: 2) these methods help the clinician to actually "do more with less" and are needed to facilitate improved functional outcomes within the context of reduced individual sessions available.

The World Health Organization has stated that health involves more than the absence of disease (2001), which would suggest that health care institutions should recognize that supporting persons access to satisfying communicative experiences is as important as providing chances to engage in physical exercise, and fulfills the healthcare mission. Making participation in group an option for both discharged patients as well as those who are still attending individual therapy is not only a creative response to a curtailed treatment time scenario, but has even been shown to be efficacious bringing improved communication. (Elman & Bernstein-Ellis, 1999) While some may continue to prefer individual treatment to a group experience, there are many others that embrace the sense of community and camaraderie found in a group, and continue to move forward as communicators by learning to use a variety of communication strategies, even after individual therapy has ended.

Although conceptualizing and initiating the group program, group planning, and recruitment and training of volunteers may be time consuming initially, once the program is established, one may find that hospital administration takes pride in the program because it demonstrates the medical center’s commitment to quality patient outcomes and accomplishes this task with limited additional costs. A clinician’s own leadership skills are also enhanced by learning how to work collaboratively in the medical setting with persons in other disciplines, such as recreational therapy, or the volunteer services coordinator, or by delegating tasks and empowering others to develop their own ideas. These leadership and collaboration skills can then be applied to other strategies to enhance services for persons with aphasia in the medical setting, such as the establishment of a specialized partner and family training series through a hospital’s community education department.

Finally, clinicians should document the changes that occur in persons with aphasia in a systematic manner, starting with baseline data taken of the current situations. With appropriate baseline data, comparisons can then be documented of changes in the targeted areas.

References

American Speech Language and Hearing Association. (2001) Scope of Practice in Speech Language Pathology. ASHA: Rockville, MD

American Speech-Language Hearing Association Committee on Communication Problems of the Aging. 1988. The roles of speech-language pathologists and audiologists in working with older persons. ASHA, 33, 39-41.

Boles, L. (1998) Conducting conversation: a case study using the spouse in aphasia treatment. Special Interest Division 2 Newsletter: Neurophysiology and Neurogenic Speech and Language Disorders. 8:24-31.

Boles, L. (2000) Solution Focused Aphasia Therapy, CSHA Magazine, 29 (3): 8-12.

Chapey, R., Duchan, J., Elman, R., Garcia, L., Kagan, A., Lyon, L. and Simmons-Mackie, N.) (2000) Life participation approach to aphasia: a statement of values for the future. ASHA Leader, Feb. 13, 2000 edition.

Chapey, R. (ed.) (2001) Language Intervention strategies in aphasia and related neurogenic communication disorders (4^th ed.) Philadelphia: Lippincott Williams and Wilkins

Coles, R., and Eales, C. 1998. The Aphasia Self-Help Movement in Britain: A challenge and an opportunity. In Group treatment of neurogenic communication disorders: The expert clinician’s approach, edited by Roberta Elman. Boston: Butterworth Heinemann.

Elman, R. (1999) Group treatment of neurogenic communication disorders: the expert clinician’s approach, Butterworth-Heinemann, Boston.

Elman, R.. (1998) "Treating Outside the Box", ASHA presentation, November, 1998, San Antonio, Texas.

Elman, R. and Bernstein-Ellis, E. (1999) The Efficacy of Group Communication Treatment in Adults with Chronic Aphasia, Journal of Speech and Hearing Research, Vol. 42(2): 411-419.

Garrett K., and D. Beukelman. (1992). Augmentative communication approaches for persons with severe aphasia. In Augmentative communication in the medical setting, edited by Kathryn M. Yorkston. Tucson, Az: Communication Skill Builders

Garrett, K. (1998) Adults with severe aphasia. In Augmentative and alternative communication (2^nd edition) edited by David Beukelman & Pat Mirenda. Brookes Publishing Co.: Baltimore.

Kagan, A., Black, S., Felson Duchan, J., Simmons-Mackie, N. & Square, P. (2001) Training volunteers as conversation partners using Supported Conversation for Adults with Aphasia (SCA): A controlled clinical trial. Journal of Speech Language & Hearing Research (44) 624-638.

Kagan, A., (1998). Clinical Forum: Supported conversation for adults with aphasia: methods and resources for training conversation partners. Aphasiology, 12: 816-830.

Kagan, A., and Cohen-Schneider,R. (1998a). Groups in the introductory program at the Pat Arato Aphasia Centre. In Group treatment of neurogenic communication disorders: The expert clinician’s approach, edited by Roberta Elman. Boston: Butterworth Heinemann.

Kagan, A., (1998b) Presentation at Supported Conversation Workshop, Pat Arato Aphasia Centre, North York, Toronto, Canada.

Lyon, J. (1992) Communication use and participation in life for adults with aphasia in natural settings: The scope of the problem. American Journal of Speech-Language Pathology, 1 (3) (May) 7-14.

Lyon, J., (1988). Communicative Partners: Their value in reestablishing communication with aphasic adults. In Clinical Aphasiology 18, edited by T.E. Prescott. Boston: College Hill Press.

Lyon, J. (1999) ASHA Teleseminar : Continuum of Care for Aphasia: Long term management phase. American Speech Language and Hearing Association: Rockville, MD.

Lyon, J. (1998) Coping with aphasia. San Diego: Singular Publishing.

National Committee of Vital and Health Statistics (2001) Report posted on website at: www.ncvhs.hhs.gov/010716rp.htm.

Threats, T. (2001) New classification will aid assessment and intervention. The ASHA Leader, 6 (18) 12-13.

Threats, T. (2002) Evidence based practice research using the WHO framework. Journal of Medical Speech-Language Pathology, 10 (3), xvii-xxiv.

Vickers, Candace, (1998) Communication Recovery: Group conversation activities for adults, Communication Skill Builders, San Antonio, Texas.

Vickers, C. (1999) ASHA Teleseminar : Continuum of Care for Aphasia: Long term management phase (with Jon Lyon and GloriaJean Wallace) American Speech Language and Hearing Association: Rockville, MD.

World Health Organization. International Classification of Functioning, Disability and Health. (2001) World Health Organization: Geneva.