AAC Consumer Protection Policies in an Evidence-Based Practice, Client-Centered Milieu

Katya Hill, PhD, CCC-SLP and Autumn Hayes-Diges, MSLP, CCC


Communication Science and Disorders, University of Pittsburgh
Pittsburgh, Pennsylvania

ABSTRACT

Augmentative and alternative communication (AAC) businesses have grown from a cottage industry into a global marketplace. With the changes that are occurring with the growth and mergers witnessed with existing AAC companies, practitioners must be conscientious about policies and motivations that may influence business practices and drive consumer choices. This paper presents survey data on the current business structures and Codes of Conduct for AAC manufacturers, and compares the results with a survey conducted ten years ago. The results suggest the need for professional organizations to develop and promote consumer awareness and protection policies to best support current client-centered approaches. Specifically, consumers should be aware that the type of business structure and existence of a Code of Conduct may influence the objectives and policies of the organization, the practices of sales representatives, and the quality and scientific rigor of evidence available through the manufacturer.

KEYWORDS

Augmentative and alternative communication, consumer-protection, client-centered, manufacturers, evidence-based practice

BACKGROUND

Rehabilitation clinical service delivery strives to create a client-centered milieu. When clients are recognized as leaders, they are free to think about and communicate a personal vision for their future and to make the choices that will get them there (1). Creating a client-centered milieu for AAC service delivery requires that practitioners encourage the client to identify and coordinate members of the AAC team, and collect, investigate, and integrate information contributed by the individuals participating on the team (2). Clients become responsible for synthesizing the information from the helping and health care professionals (e.g. occupational and physical therapists, speech-language pathologists, vocational rehabilitation counselors, case managers), educators, advocates, funding agents, and AAC manufacturers and representatives.

Over forty-years ago, the AAC field started as a cottage industry with owners having a personal stake in developing and designing assistive technology (AT) products to meet the communication and access needs of individuals known to them, often times family members. Today, AAC/AT has grown into a multi-million dollar industry and the demands of a profit-driven and reimbursement-controlled market create very different business practices from the original “mom and pop” companies. Consumer-protection becomes a bigger concern for professionals striving to empower clients in the decision-making process involved with applying evidence-based practice.

Evidence-based practice (EBP) is the conscientious and judicious use of current best evidence in making decisions about the care of individuals (3). Client-centered approaches to AAC EBP involve the individual with the significant communication disorder and his/her family members in the process of collecting, discussing, and using external, internal, and personal evidence (4). While the concept of EBP is a laudable one, there is a need to exercise caution about uncritical acceptance of evidence (5). This may be particularly true when the source of evidence is from the AAC manufacturer and it is being gathered and critiqued by the client and family.

STATEMENT OF THE PROBLEM/PURPOSE

In order to be a fully-informed consumer, the end-user of AAC/AT and/or family members may benefit from knowing the business objectives of AAC manufacturers and presence of a Code of Conduct for the sales representatives. The purpose of this paper is to provide evidence on the stated business structure of AAC manufacturers that influence business objectives, and to identify the existence and use of a Code of Conduct instituted by AAC manufacturers to protect customers from unprincipled sales behavior.

METHODS/EVLUATION

This study replicated the procedures followed by Hill, Lytton, and Glennen (1998) in identifying the business structures and existence of a Code of Conduct for AAC manufacturers. A written Code of Conduct reflects the company’s mission and values and provides guidelines or standards for company polices on professional and ethical behavior and practices for the sales force. The Internet-search procedures and phone contacts were designed to reflect the steps a consumer or clinician might follow to learn more information about an AAC manufacturer for evaluating company evidence and making product choices. AAC manufacturers (N=12) were identified from the ATIA (Assistive Technology Industry Association) membership list at the ATIA website. A website search was performed for each AAC manufacturer to answer the questions below. A phone call to the AAC manufacturer was placed to follow-up a website search that failed to provide information to answer the two target questions.

  1. What is the ownership status or business structure for the AAC manufacturer?
  2. Does the AAC manufacture have a Code of Conduct for its sales force and do they provide public access to this information?

RESULTS

The results of the website searches revealed that 0 out of 12 AAC manufacturer members of ATIA had the ownership / business structure clearly available on the website. However, press releases from AAC manufacturers identifying the ownership structure were available for 4 companies. When compiled as of January 2008, the results from the three sources of information revealed: 2 Sole Proprietor / Privately Owned, 8 Corporations, specifically 3 out of 8 are Employee Owned, and 2 out of 8 were supported on venture capital, and 2 are unknown. One company is part of a publicly traded corporation.

The results of the website searches revealed that 1 out of 12 AAC manufacturer members of ATIA had a written Code of Conduct available at the website. A Code of Conduct was affirmed by a written document that met the definition for compliance and reinforcement of the values and expectations within the organization. Although the Human Resource personnel may have referred to the HIPAA guidelines or CM Medicare DMEPOS supplier standards, these standards do not meet the criteria for a Code of Conduct.

DISCUSSION/CONCLUSION

The ownership structure of a durable medical equipment (DME) company like the AAC industry has a significant, but potentially hidden, impact on the customer. The fiduciary concern of a business shifts toward investors when the organization has stockholders or venture capital. Stockholders and venture capitalists expect a return on investment at a significantly higher rate of return than other investment mechanisms. An increase of AAC companies seeking venture capital for building and increasing their market share is an observable trend. Ten years ago, no AAC companies had public stock options or venture capitalist groups providing financial support, and now 16% of the manufacturer members of ATIA have publicity releases identifying such agreements. Along with this trend that puts management in the position to meet investor expectations, the AAC market is seeing an increase toward a pharmaceutical sales model.

Brodkey (6) examined the impact of the pharmaceutical industry’s sales model upon the medical profession with respect to the role of pharmacology education. The educational/ promotional activities (i.e., industry-sponsored lectures, meetings with representatives, gifts/free products/samples) of a pharmaceutical company are financed by the marketing and administrative budgets and some of a companies’ research and development budget may also be used for marketing research. The largest portion of a pharmaceutical company’s marketing is targeted toward physicians given that the prescriptive patterns of doctors can cause shifts of millions of dollars of market share. If the field of AAC is indeed demonstrating a shift away from client-centered care toward investor profitability, as has been demonstrated within the medical profession and pharmaceutical industry, the need for consumer protection guidelines and Codes of Conduct are obvious.

The Centers for Medicaid and Medicare Services (CMS) protect consumers being evaluated for wheelchairs by requiring that the equipment come from a supplier employing a RESNA-certified Assistive Technology Supplier (ATS) “who specializes in wheelchairs and who has direct, in-person involvement in the wheelchair selection for the patient (RESNA, 2008).” No similar CMS requirement exists for AAC evaluations. Consumers are protected when AAC manufacturers employ a sales force that holds professional, clinical certificates or licenses, because the sales representative must function under a Code of Ethics for the profession. However, AAC sales representatives that do not hold professional certificates or licenses practice outside a professional Code of Ethics. Overall, consumers are not protected from an AAC manufacturer’s sales force that does not have training requirements in communication disorders, AAC, AT, or EBP.

The results of our probing found that only 1, or 8%, of the AAC manufacturer members of ATIA were able to produce a written Code or Conduct (Prentke Romich Company) that could be accessed at their website. This was less than the 20% finding that was reported in the study conducted 10 years ago (2). At that time, professional membership organizations were encouraged to promote the use of such codes by manufacturers to protect consumers. In the continued absence of training requirements for AAC suppliers, the minimum requirement to protect consumers from suppliers trying to sell product would be to have safeguards to build the awareness about practices that constitute unfair pressure on or play upon the lack of knowledge/experience of the consumer.

SUMMARY

Professional practitioners value a healthy, growing AAC/AT industry. Historically, major technology innovations have come from the research and development of the AAC manufacturers. However, with financial growth from outside the industry may come unrealistic expectations of financial profitability or lack of awareness of the impact of poor AAC choices on the quality of life of the consumer.

Reliable and valid evidence is a key component of evidence-based practice. In a client-centered service delivery milieu, the client is empowered to contribute to the decision making process. In many instances, the client and family are expected to interact with AAC manufacturers to explore a product line and the technology options/features. However, AAC sales and marketing practices that are investor-driven and prescribe to a pharmaceutical business model fail to fully inform the end-user of the range of AAC/AT options available to optimize communication performance. In some cases, inadequate evidence may be distributed and used to make decisions about AAC treatment and result in limited-to-poor performance and outcomes.

REFERENCES

  1. Fearing, V. G. & Clark, J. (2000). Individuals in Context: A Practical Guide to Client-centered Practice. Thorofare, NJ: Slack Incorporated.
  2. Hill, K., Lytton, R., & Glennen, S. (1998). The role of manufacturers’ consultants in delivering AAC services. In Proceedings of the 8th ISAAC Biennial Conference. Dublin, Ireland
  3. Sackett, D. L., Rosenberg, W. Mc, Gray, J. M., Haynes, R. B., & Richardson, W. S. (1996). Evidence-based medicine: What it is and what it isn’t. British Medical Journal, 321, 71-72.
  4. Hill, K. & Scherer, M. (accepted). Matching Persons & Technology: Data-driven AAC Assessments. In Proceeding for Technology and Persons with Disabilities, California State University, Northridge (CSUN). Los Angeles, CA.
  5. Colyer, H., & Kamath, P. (1999). Evidence-based practice: A philosophical and political analsysis: some matters for consideration by professional practitioners. Journal of Advanced Nursing, 29 (1). 188-193(6).
  6. Brodkey, A. (2005). The role of the pharmaceutical industry in teaching psychopharmacology: A growing problem, Academic Psychiatry, 29, 222-229.

ACKNOWLEDGEMENT

The authors wish to thank the individuals who rely on AAC and family member who have participated in the Town Hall Meeting at the Pittsburgh Employment Conference for Augmented Communicators (PEC), and their willingness to share personal experiences related to this topic.

CONTACT

Katya Hill, PhD, CCC-SLP, University of Pittsburgh, 5026 Forbes Tower, Pittsburgh, PA 15260, Office Phone (412) 383-6943, EMAIL: khill@pitt.edu