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A Campaign to Be Heard
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The prospects were grim. Mrs. Jones’ stroke had left her unable to speak and unable to use her left arm and leg. She required physical, occupational and speech therapy. But it was 1999. The Balanced Budget Act of 1997 as passed by Congress capped therapy services covered under Medicare Part B at $1,500 for occupational therapy, with physical and speech-language therapy bundled under another $1,500 cap, effective January 1, 1999. Because she required both physical and speech therapy, it was clear that Mrs. Jones would have to choose whether she wanted to receive enough therapy to enable her to walk, or enough therapy to enable her to talk.
Mrs. Jones was not alone in this terrible decision. Therapists watched helplessly as patients across the country faced cutbacks in therapy services that were vital to their recovery. Some were like Mr. Smith, who used his therapy coverage early in the year when he received 75 days of physical and occupational therapy to regain physical functioning after a stroke. Unfortunately, some months later, when seizures left him with impaired swallowing and unable to perform activities of daily living, his Medicare Part B benefits were exhausted. Instead of receiving therapy that would have allowed him to be discharged home in a functional state, Mr. Smith remained in the nursing home and lost his independence.
The healthcare community knew that although Congress was concerned with saving money in the Medicare system, this law was harming beneficiaries in ways Congress could not have intended. It was time to act.
“The therapy caps were an 11th hour addition to the Balanced Budget Act, and Congress approved it with no data, no hearings and no research,” says Peter Clendenin, executive vice-president of the National Association for the Support of Long Term Care (NASL). “We had to let the members of Congress understand the impact of this legislation.”
Lobbying has gotten a bit of a bad reputation in recent years. The truth is, most lobbying simply means giving lawmakers the facts to show them that what may look good on paper in Washington may not work quite so well in the real world. The legislation to cap therapy had grave consequences for patient care, and it galvanized the healthcare industry to bring the real-world facts to Washington.
Marshaling forces to bring about legislative change is no small task. “When you start lobbying on an issue, you think of it as a campaign,” says Clendenin. “We put together a plan to find allies, collect data, and raise public awareness.”
Step One: Building the Coalition
The sound of one voice is thin as a reed, but the sound of many voices swells to a chorus. “When lobbying members of Congress, the more voices the better,” says Mark Besch, vice-president of clinical services for Aegis Therapies. “The broader the constituency group, the more credibility and strength you have.”
The first step was to put together a coalition of allies that would become this powerful chorus. In addition to its own ancillary healthcare members, NASL set out to find partners who were concerned about the effect on Medicare beneficiaries. “We spent a lot of time cultivating relationship with other groups, such as the American Parkinson’s Disease Association, the Alzheimer’s Association, the Medicare Rights Center, the Disability Coalition, the American Physical Therapy Association, the American Occupational Therapy Association, and the American Speech-Language-Hearing Association,” says Clendenin.
One of the coalition members was the American Health Care Association. Bruce Yarwood, president and CEO, knew the associations and organizations had to work together to craft their concerns into a unified request that they could present to legislators. “When you try to make something happen, first you figure out what you are asking for,” he explains. “In the case of therapy caps, it was simple: We all wanted the caps off.”
Step Two: Collecting Data
Collecting accurate and reliable data was the only way to prove the harm this legislation was doing to patients. “Data are absolutely fundamental to any advocacy,” explains Clendenin. “In the early days of my advocacy for nursing homes, too many times I found myself going to officials and saying, ‘Boy, these cuts are not fair and it’s going to hurt patients.’ Well, it sounds good and feels good, but I quickly found out that unless you can document exactly how a law will impact patients, you can’t make a case. After a session in which I was pretty well rebuffed by a senator, I vowed that I would never go unprepared or without good reliable factual information to make our case.”
NASL began a search for the data that would be most persuasive and reliable, hiring a number of experts and consultants to assist in correlating patient profiles and cost ranges by disability. “We had this gut-level reaction to the problem, but when you have information that’s impartial and unbiased, you start to get a better feel for what you are talking about,” says Clendenin. In general, the data revealed that the needs of nearly a third of nursing home patients would exceed the caps. To ensure an unbiased data bank, third parties, such as university faculty and consultants, worked on the data. “We wanted no taint of bias,” says Clendenin. “Our data were unimpeachable.”
At the same time, the various healthcare organizations lobbied Congress. “We told Congress members not to take our word for it, but asked them to put a study in place to examine patient characteristics and diseases that were most likely to exceed these caps,” says Clendenin. “CMS hired a consulting company to begin studies of therapy cap alternatives.”
Nancy Taylor, a principal at Greenberg Traurig, outside counsel to the American Health Care Association, became one of the key resources for preparing position papers and synthesizing data to argue the case against caps. “I’m a fundamental believer that you have to have analytical support for what you are doing,” says Taylor. “You evaluate the impact from both a legal and policy perspective to understand who is hurt, why they are hurt, who is benefited, and if that benefit is worthwhile. In the case of therapy caps, it was savings to the federal government, but it was the first time Congress placed a limit that would harm beneficiaries.” Taylor put together materials to support the industry’s position, wrote position and policy papers, and drafted testimony. “These are hard issues because the fix costs money,” she notes. “So you have to give them a reason to spend more money or an alternative way of doing it so beneficiaries aren’t harmed.”
Step Three: Developing Grassroots Relationships With Legislators
At the top level, industry lobbyists began lining up legislative supporters who opposed the caps. “We focused on the members of key committees of jurisdiction on the issue,” says Taylor. “In the case of therapy caps, it was the Senate Finance Committee, House Ways and Means Committee, and House Energy and Commerce Committee.”
But change is more than a top-down effort—other voices had to be raised. Employees on the front line of patient care were encouraged to contact their representatives and tell the stories of their patients. “The more you do it, the more sophisticated you become, and you begin to develop some relationships,” says Aegis’ Besch. “For example, you need to get to know the healthcare legislative assistant in your representative’s office. I’ve developed a relationship with that individual—she knows who I am and what my concerns are, and she’s happy to sit and talk with me. She’s looking for information and actually reaches out and calls me. My representative told me that for years many in Congress have agreed that the Part B caps are bad policy. What they need is information on how it affects people negatively.”
NASL was aggressive in obtaining that information. The association assigned tasks to its members in every state and every district. For example, a therapist in a particular state would be responsible for taking the data NASL had prepared about nursing homes in that area and meeting with the appropriate member of Congress. The therapist might arrange a visit to a nursing home and discuss the fact that many of the patients in the member’s district are not going to receive therapy because of the law. The crucial step is to ask the senator for support. “We tell them to pin down their senators, get them on the record,” says Clendenin. “Legislators can be evasive. I hope that’s not a revelation.”
Hearing from actual patients can be even more powerful than hearing from company employees. Says Besch: “We were able to identify some families of beneficiaries or beneficiaries themselves who had a negative experience with the caps, and we encouraged them to write letters and make phone calls to their senators and representatives.”
Editorials and letters to the editor in local newspapers stirred up the issue for the public. “The industry as a whole not only became more politically active, but we did things we’ve never done before,” says Yarwood. “We created print and TV advertising that showed the impact of people not getting help.”
Late in 1999, Congress granted a moratorium on the therapy caps beginning January 1, 2000. In 2002, when Congress again cut Medicare and the moratorium on the caps was set to expire, the political advocates stepped up the pressure again. The American Health Care Association mobilized the Driving for Quality Care RV Tour that visited 45 states in six months. “We would bring the RV to nursing homes and state capitals across the country, where we would hold a press event and rally,” says Yarwood. “We’d invite members of Congress or their staff to attend. The idea was to get the local member of Congress together with local nursing home therapists, nurses, nurse aides and administrators to bring home the message on how the cuts would affect individuals in their state.” A petition from the RV event garnered more than 200,000 signatures and was presented at a rally on the steps of the nation’s Capitol.
Congress paid attention. The therapy caps were eventually extended to December 2005. In January 2006, recognizing that the caps, now adjusted for inflation to $1,740, were still inadequate, CMS initiated an exception process for patients whose needs exceed the caps. The industry is still actively working with CMS to find a solution that will save money and not penalize beneficiaries.
Advocacy isn’t hard; it’s simply a question of speaking up. Legislators do listen and they do want to hear from their constituents. The ability to make a well-thought-out, reasoned argument for a cause and to present it to those who can act on it is heady stuff. “I’ve found that once you expose people to political advocacy, they really like it,” says Clendenin. “It’s like letting the horse out of the barn and you can’t get him back in. They say, ‘Gee, I got my senator to come over to the nursing home and we had a great discussion. I write him now and I’ve met his aide and now we’re getting into other issues.’”
The voice of the people clearly resonates in the halls of Congress. That’s how government of the people, by the people, and for the people really works.
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