We can accomplish so much more by working together than any of us can accomplish working alone,” is a saying from the civil rights movement. Its truth will become abundantly clear when bridges are in place to facilitate cooperative efforts between the HME services industry and the people it serves.

In large measure, the future of our industry relies on the strength of the bridges we build with consumers, and the strength of these bridges will be directly proportional to the energy and commitment we put into incorporating the consumers’ agenda into ours.

The good news is the HME services industry appears to be enjoying a period of relative stability on the legislative front. Both the Balanced Budget Refinement Act of 1999 (BBRA) and the Benefits Improvement and Protection Act of 2000 (BIPA) contained more good news than bad for our industry. Yes, the pesky issue of why home oxygen services did not receive a cost of living adjustment while other DME did remains. But Congress realizes it went too far in the Balanced Budget Act of 1997 (BBA) and actively talks about making our industry whole again.

However, as DME businesses run to the bank with checks reflecting the first significant fee schedule adjustments in 5 years, they are aware that nationwide competitive bidding is once again being discussed as a cost-saving measure. There are many other issues lurking in the background—average wholesale price (AWP), consolidated billing, and others—any one of which can set the industry back to pre-Balanced Budget Reform Act (BBRA) status.

Home care is not a threat to our government or to the Medicare program. Even our most vocal critics acknowledge that home care is a cost-effective, clinically appropriate alternative to facility-based care. Surveys show that Americans prefer home-based health services to institutional care 9 to 1. It is clear that home care must play an even bigger role in our nation’s health care delivery systems if we are to survive the demographic onslaught of the Baby Boomers without a huge increase in taxes. The question is then, why must our industry continue to operate under a state of siege?

The answer is threefold:

1) Congress and the Centers for Medicaid and Medicare Services (CMS) do not fully understand our industry and have not made an active effort to learn more about its benefits and its potential.

2) In Washington, importance is measured in terms of the percentage of the overall budget consumed by a specific program or service. Spending on HME less than 2% of what the nation pays for all health-related programs and services.

3) The HME services industry has not formed alliances with consumers. Thus it ends up trying to make its case alone. As such, those of us who wander the halls of Capitol Hill advocating for adequate funding and fair treatment for our industry are perceived as representatives of a “special interest” and therefore not worthy of serious consideration.

It may seem simplistic, but all three of these problems would begin to disappear if the industry invested more time and resources in reaching out to the people who use our products and services. The people we call “consumers” are “voters” to politicians, and there are more consumers/voters than there are HME providers.

When consumers tell their stories they put a face on complex issues. A few active consumers can turn a seemingly insignificant issue into a compelling demand for immediate action. Consider these examples of the ability of consumers to make their voices heard and change public policy:

In the early ’80s, public transit systems around the country received generous federal funding but were largely inaccessible to people with disabilities. Transit operators knew of this shortcoming but ignored it for financial reasons. Then small bands of people using wheelchairs started to show up at bus stops accompanied by television news crews. The transit providers realized they had to do something and turned to Washington for the funds to do it. Within months, legislators enacted a federal law to require lifts on all new buses. The transit operators became advocates for disabled riders, and together they changed the world.

In the mid ’90s, people with hemophilia got the medication they needed to control their disease established as a specific benefit within the Medicare program. Physicians had tried to secure this coverage for years, but it was not until they showed up on Capitol Hill accompanied by people with hemophilia who also were constituents of key legislators that the change occurred.

Our industry must learn from these examples. However, it would be unrealistic to say we just need to recruit a few patients receiving home oxygen therapy to reinstate the annual cost of living allowance (COLA). We tried that tactic in 1997 and got a 30% cut in home oxygen reimbursement instead.

We learned that it is a waste of time to create a new organization whose sole focus is to speak out on our behalf because, to legislators, these organizations are transparent fronts for direct industry lobbying. Instead, we must build relationships with existing consumer organizations that are mutually beneficial to everyone concerned. Our industry should take advantage of the fact that there are a number of consumer groups that have established strong credibility in Washington, including Easter Seal, the National Multiple Sclerosis Society, the American Lung Association, and United Cerebral Palsy Association. There are also many “cross disability” and disease-oriented coalitions that have tremendous grass-roots networks capable of blanketing congressional offices with letters and email.

Our industry should learn what is important to these groups and make an earnest effort to help them achieve their goals. We must support their activities financially and as volunteers. Most important, our industry has to become an advocate for consumer issues.

The foundation for our bridges to consumer groups must be built at the local level. Individual providers working with local chapters of national organizations are the building blocks upon which our national trade association can establish strong links to consumer groups. Building and maintaining these bridges will be hard, but the return on the investment of time and resources can be significant.

For example, rehabilitation providers know how inadequate the HCPCS coding system is but when we talk to Congressional and CMS representatives about fixing it their eyes glaze over. Do you think they would react the same way if 1,000 wheelchair users representing national consumer organizations descended upon the Capitol and told horror stories about how the system is denying them access to the technology they need to live independently? How long would the new oxygen retesting requirements remain in place if 10,000 letters were sent to Washington by members of the American Lung Association telling policymakers how much of a burden this policy places upon patients? Would the AWP issue still be alive if every member of Congress received 5 letters from constituents with cystic fibrosis telling them of the personal consequences of a massive reduction in reimbursement for aerosolized medication?

But we have much work to do before we can count on this kind of support from consumers. Every provider must realize that the success of his or her business is inextricably linked to having a productive relationship with local consumer organizations—especially those affiliated with national groups.

Providers need to commit both human and financial resources to support the ongoing activities and events of consumer groups. They need to educate the groups about the issues important to their businesses and the impact they could have on consumers’ lives. Two ways to do this are to write articles for consumer newsletters and provide speakers at consumer events.

As our industry interacts with consumers, both groups will begin to identify areas of common ground and common concerns. Providers and consumers will learn from each other and learn more about each other. This exchange will support relationships where both parties feel comfortable asking each other for a favor.

At the national level, our trade association needs to join coalitions, participate in national forums and support consumer events. The industry needs to seek out opportunities to listen to consumer concerns and incorporate them into position papers and talking points. Those of us who frequent the offices of policymakers must take consumers along to credibly articulate the business and human impact of policy actions.

Make no mistake about it, the HME services industry will continue to face challenges as the government looks for savings in healthcare programs, such as Medicare and Medicaid. Regulatory reform tends to focus on the big issues and often what serves as a solution for a big industry creates a problem for ours. We can no longer afford to go into battle alone. We must look to the people who use our products and services and find allies willing to be at our side as we are committed to being at theirs. Strong bridges must exist that connect our two perspectives into one strong constituency that will not be silenced or ignored.

David T. Williams is director of government relations for Invacare Corporation and the executive director of the Re/hab and Assistive Technology Council of the American Association for Homecare. A long time political activist, Williams sits on the boards of various consumer groups and served for 8 years as chief advisor on health and disability policy to the governor of Ohio. He is married to Frances Dwyer (Fran) McCaffrey, a quality assurance manager for a pediatric rehabilitation center and an organizational development and group dynamics consultant.