Tapping Into the Authentic Voice of Today’s Consumer

Q: You believe it’s critical for consumers to advocate for themselves — i.e., directly communicating to legislators, funding sources, etc., about their needs, concerns, dreams, etc. Why is this a more powerful or eff ective means of communication versus having a clinician or equipment supplier relay such messages?

Ann EubankAnn Eubank: In the history of successful consumer movements, one of the essential elements is the authentic voice of the consumer. Whether conveyed from the unique perspective of the consumer or in collaboration with the interests of other stakeholders, this voice off ers insight into potential consumer impacts. It is particularly important that the messages convey an independence of thought and the capacity to draw upon the actual consumer experience. Can medical providers and clinicians discuss that experience? Certainly! But will it have the power of the first-hand stories of those most directly affected? Seldom!

Relating to the rehab market and wheeled mobility, we believe that insurers/payors have a legal obligation to ensure that appropriate equipment, based on medical necessity, be provided in a timely manner and that consumers be given ample choices of suppliers for purchasing/renting and servicing such equipment. We recognize the need for payors like Medicare to ensure that funding for durable medical equipment is properly spent, but we also believe any efforts to reduce such expense must not sacrifice access to appropriately prescribed equipment nor the services related to such equipment.

Through our conversations with various payors, we have been told, “Rate cuts do not necessarily equal lack of access.” It is understandable, in today’s financial environment; the payor is seeking the most cost-eff ective manner in which to provide appropriate equipment and services. Yet, who defines “appropriate”? A unified consumer force will effect positive policy change by voicing how inadequate products and service create an increase in medical expenses and unemployment.

Additionally, inappropriate products and lack of service is a civil rights issue, as it limits Americans’ access to services available to the general population. Consumers must speak out in a united voice.

We are able to unite through a non-profit, consumer-run organization.

Consumers need to make sure their voices are being heard and their stories are being viewed by the most appropriate audience.

It is exclusively the consumer that can largely argue unencumbered by the specter of personal financial gain. Th erefore, it is critical that the consumers’ capacity to speak on their own behalf on DME and other healthcare concerns be reinforced and enhanced. Building that army of consumer self-advocates is the aim of UsersFirst.

Q: In the past, the DME and complex rehab industries have recruited consumers to join them in calling on members of Congress, meeting with staff ers on Capitol Hill, etc. Consumer response/turnout for these events, however, has been limited. What factors do you think have limited consumer participation in the past?

AE: Th e DME industry has successfully challenged the complex rehab carve-out for competitive bidding on the basis of consumer access and choice concerns. Although the number of consumers (about 40) who participated in the Capitol Hill visits with the CELA conference may seem small, we believe the event was a great success, and the consumer participants were terrific spokespeople.

Legislators need to actually see that complex rehab equipment is not an “out-of-the-box” product and that the adjustability of such equipment provides the freedom of movement for Americans with mobility limitations. And that this equipment may avert more costly healthcare problems (e.g., hospital admissions for pressure ulcers).

The industry’s collaboration with consumer organizations has helped to bring the consumer voice forward and expose it to policymakers without coercion or bias. It has also helped consumers and consumer groups become more aware about what is at stake if access to complex rehab is limited.

Overall, more consumer involvement is needed to effect positive policy change. In other words, the community of people with mobility limitations needs to mobilize, and UsersFirst can serve as one of their vehicles to do so.

One of the reasons for limited consumer participation may be the diverse nature of the community and the complexity of the discriminatory policies negatively affecting an individual consumer. For example, a consumer may not think much at all about her wheelchair until it is not working any more. How does someone like this become interested in a consumer movement related to her wheelchair?

Additionally, wheelchair consumers, as a whole, may unfortunately be accustomed to an environment in which their needs — physical, social and political — are not typically met. Conceivably, when a consumer learns the best possible mobility solution is unavailable, he or she may acquiesce and accept less rather than be left with nothing.

Clinicians and suppliers can foster consumer involvement by connecting consumers to an organization like UsersFirst, which focuses on access to and quality of wheeled mobility. The service delivery process of wheeled mobility is complicated and often frustrating.

Healthcare professionals can connect consumers to a consumer-run, non-profit organization that offers support by providing information and guidance.

Users First

Q: Explain UsersFirst’s goals for consumers. Can you give us an example of some projects you’re working on now?

AE: UsersFirst (usersfirst.org) has three goals or mission statements:

  1. Enroll all people who believe Americans should have access to appropriate wheeled mobility.
  2. Offer education and guidance through the service delivery process of wheeled mobility.
  3. Challenge discriminatory policies. UsersFirst is building a strong, united consumer voice concerning all applicable issues related to access to appropriate wheeled mobility. We work toward this goal by accessing the chapter network of 37,000 members. National Spinal Cord Injury Association, also part of United Spinal Association, is the membership arm of United Spinal Association. UsersFirst is the grassroots arm focusing on wheeled mobility.

A consumer movement must begin with the consumer. The chapter network consists of autonomous non-profit consumer groups located throughout the country. UsersFirst brings the “mobility issues” to the chapters and provides a mechanism for them to voice their concerns.

UsersFirst also provides education materials to all concerned citizens, along with phone support for consumer questions.

Currently, UsersFirst is collaborating with all stakeholders on a variety of funding limitations including capitation, Medicaid cuts and Medicare policy. UsersFirst welcomes all consumer stories, questions and frustrations. UsersFirst is an empowerment model and therefore provides information for consumers to better understand the current system and the support to challenge discriminatory policies.

This article originally appeared in the January 2012 issue of Mobility Management.

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