In the last two issues of HME Today, we wrote about consumer/disability organizations that have been effective in Washington. Several readers have sent messages asking why customer involvement in industry advocacy is so important, and suggesting that incorporating the disability agenda would simply muddy the waters. These are legitimate questions that deserve answers.

The "customers" of HME, home oxygen therapy, and rehab providers are all people with disabilities (PWD) and/or chronic illnesses. This constituency is well organized and effective. The members of organizations such as the National Multiple Sclerosis Society (NMSS), the National Council on Independent Living (NCIL), the American Association of People with Disabilities (AAPD), ADAPT, and other groups have formed a coalition with a track record of getting things done in Washington.

While Congress and CMS have demonstrated a propensity for ignoring advocates for the HME industry, they pay attention to the disability community and they act favorably on many of the items on its list of legislative priorities. It follows that if the HME industry were to incorporate the "disability agenda" into the industry agenda, the disability community would respond in kind and advocate for certain items in the industry agenda.

By forming a broad-based coalition, the disability community was able to get the Americans with Disabilities Act (ADA) passed—the world's first comprehensive civil rights law for people with disabilities. This was no small feat given that the legislation was opposed by powerful lobbies such as the Chambers of Commerce, the National Federation of Independent Business (NFIB), and the National Association of Mayors. Through rallies, letter-writing campaigns, and Capitol Hill visits, advocates for passage of the ADA were able to build so much support in Congress that the legislation passed in the House by a vote of 399 to 1. In the Senate, the vote was 99 to 0.

In 2003, the disability community drafted and introduced legislation to remove some of the major barriers keeping PWD out of the work force. This legislation contained provisions to allow Medicare and Medicaid beneficiaries to purchase continuing coverage under these programs after they returned, or entered for the first time, the world of work. Once again, rallies and marches on Capitol Hill were supplemented with hard-nosed, one-on-one lobbying. In October 2006, the Ticket to Work/Work Incentives Improvement Act was signed into law.

Also in 2003, the disability community first sought legislation that would enable PWD forced to live in nursing homes and other institutions to move into more appropriate community settings (know as "money follows the person" or MFP). This legislation has been vigorously opposed by the nursing home lobby because the money paid to the nursing home would literally follow people to provide those supports needed to live independently in the community of their choice. While this legislation has yet to be passed into law, funds have been included in the federal budget since 2007 to use for demonstration grants in 15 states. The demonstration grants and activities are beginning to prove a point often argued by home health care providers; it is far less expensive to support an individual with a disability living in the community than it is to keep him in a nursing home or other institution.

This leads to the Community Choice Act (HR 1621/S 799)—the top legislative priority for disability rights advocates currently before Congress. This bill builds on the information garnered from the 15 MFP demonstration grants and clearly articulates the right of any individual with a disability to live in the community with Medicaid funding for necessary personal care assistants and other supports. Thanks to an effective grassroots campaign, the Community Choice Act has 104 House sponsors and 23 cosponsors in the Senate.

Finally, as proof that the body politic takes the disability community seriously; the Democratic and Republican parties have pledged to have their presidential nominees present in Columbus, Ohio, on July 26 for a debate on disability issues. Members of the House and Senate, and the next President of the United States, have respect for the disability community. Its advocates and lobbyists have been successful, and the HME industry would do well to get them to advocate for issues important to the industry.

In short, industry advocates and lobbyists should consider passage of the Community Choice Act as important as legislation to repeal or delay the competitive bidding program. This would be the foundation upon which a true partnership between consumers and industry advocates could be forged.

Cara C. Bachenheimer, JD, is VP of government relations for Invacare Corp. David T. Williams is a political and legislative strategy consultant.