Government Affairs:

How to Effectively Involve Patients in Your Lobbying Efforts

• By David Kopf
• Jul 01, 2010

Providers face a precarious position that is somewhat unique to the homecare industry: while many of them are small- or medium-sized businesses, they must engage in the sort of Washington, D.C. lobbying that many other smaller businesses never have to consider.

Add to that the funding pressures HME providers work under, and fighting to ensure their industry and livelihoods survive poor public policy decisions and enforcement becomes all the more difficult.

However, providers have a largely untapped source of help when it comes to their industry advocacy efforts. Better yet, patients can be more effective than providers. While it is one thing for a provider to meet with a lawmaker, homecare patients can leave a lasting impact on lawmakers because their stories are so personal.

Newfound Involvement

Up until recently, many patients have been reticent to join in providers’ lobbying efforts, but that is beginning to change now that they realize how much their quality of care depends on their HME providers.

“One of our great dilemmas is getting consumers involved, and rightly so,” Gerry Dickerson vice president of rehab technology for mobility and rehab provider Medstar Surgical in College Point, N.Y. “Now we have crossed the threshold of what was original considered a ‘dealer issue.’ We’re at a point where [patients] are losing access to services.”

Properly Prepare Meetings

A key issue is that meeting with local press or the legislative staff or a Representative or even the lawmaker can pose a difficult challenge for patients, especially mobility patients, he says. Getting up, dressed and traveling to the meeting can be nothing short of an ordeal. Meetings must be arrange to meet the patient’s schedule, as well as that of any attendant care.

Assigning key staff members to assist in arranging meetings with press and lawmakers can go a long way toward ensuring successful meetings. That person can perform an initial assessment to see if the meeting will be even feasible. For example, Dickerson recalls a meeting request from the staff of then Senatorial candidate Hillary Clinton to meet with patients at a building that Medstar’s staff advocate suspected was not accessible.

“So we went and looked, and there was probably the highest fl ight of stairs I had seen in my life,” he says.

Ensure Focus

Now that there are patients willing to work on the industry, ensuring they focus on the central issues at hand is important. Dickerson says that, like providers, patients have many issues they might want to discuss, they must stick to the central “ask”(what do they want from the lawmaker) and message points of the meeting.

“You need to hit your key points and move on,” Dickerson says. “What’s the ask? Go in with the ask, and focus on it.”

Additionally, Dickerson advises that patients to be straightforward and honest about their situations and life stories, because that alone cane be very powerful.

“There’s no reason to embellish, because they are blown away to begin with,” he says. “We had one consumer with us who said, pointing to me, ‘This guy has been the only constant in my wheeled mobility the last 30 years; I’ve gone through doctors, attendants, but the one guy who remained the same is him.’ I didn’t coach her with that; it just came out.”

Leverage Staff, Lawmaker Reactions

Some legislative staff or lawmakers might be initially surprised by a patient’s condition and the milestones he or she has accomplished. The HME and the patient should consider this a benefit. Dickserson recalls a legislative meeting he conducted with a friend and advocate who is a post-polio, ventilator-dependent with a quadriplegic who has gone through graduate school. Their meeting was with a 27-year-old staffer who expressed surprise at hearing about the advocate’s accomplishments.

“It struck me that she had no baseline, so we went back and explained to this staffer what it meant to live in an iron lung,” he says. “At 27-years-old, she had never heard of an iron lung … this girl’s eyes got the size of saucers.”

That kind of reaction works to the provider’s and patient’s advantage by leaving a lasting impression. This is especially true considering the vital and productive lifestyles that most patients lead these days, and the fact that current public policy and its enforcement is working to eradicate the gains that patients have made with the help of homecare. “You have show how far patients have come in technology and independence, and just how far backwards we’re really heading with cuts in reimbursement,” he says.

This article originally appeared in the July 2010 issue of HME Business.