The purpose of this online seminar series is to increase consumer involvement in Medicaid nursing facility reimbursement. My name is Eddie Miller. I am an Associate Professor of Gerontology and Public Policy and Fellow, at the Gerontology Institute, at University of Massachusetts Boston, and Adjunct Associate Professor of Health Services, Policy, and Practice at Brown University. Cynthia Rudder is director of special projects at the Long Term Care Community Coalition, or LTCCC, a citizens advocacy group in New York State. This is the last of five modules in the online series. It will review some potentially effective supplemental strategies consumer groups in Minnesota and New York have pursued when trying to influence state policy in this area. First, we would like to thank The Commonwealth Fund and, in particular, our Project Officer, Mary Jane Koren, for the funding necessary to make this series of web modules and the research on which it is based possible. In short, our findings suggest that advocacy groups sometimes supplement higher level interactions with state legislators, agency officials, and reimbursement policy taskforces and workgroups with more grassroots-oriented approaches to influencing government policy in this area. On the one hand, supplemental activities include such little used grassroots strategies as newsletters and press releases, and more frequently used strategies such as action alerts, email and letter writing campaigns, and legislative lobbying days. On the other hand, they include developing coalitions and relationships with consumer oriented groups, unions, and provider organizations. Let's start with some of the grassroots strategies advocates have employed. It seems that the general purpose of the grassroots strategies identified is to complement higher level participation by letting key decision makers know that you have large numbers of people behind you who support your goals. The idea is that although demonstrating knowledge will get you a seat at the table and allow you to contribute productively, the more traditional grassroots tools may be necessary to bring political pressure to bear should direct negotiations with the state legislature, governor, and/or state bureaucracy stall. Explained one New York advocate, "we first try to see if we can get the powers that be to be somewhat responsive. If they're not responsive we have to go after them. It's something we have in reserve." "The number of rank and file New Yorkers who are behind the Long Term Care Community Coalition isn't all that important to me paying attention to them," indicated one New York Legislator, but "The vast majority of legislative offices, numbers count a lot more, and so if consumer advocates are going to be effective, they not only need a quality message and a well defended and explained message, they also need to focus on having a large, popular base as well, that can voice their message." It was generally agreed that grassroots strategies work when the messaging is kept simple and the focus is on the issues that people can more readily sympathize with. "We only go to grassroots when it's really bigger issues that we can get people to connect to," reported one New York advocate. "You can connect to quality pools; you can even connect to the add-ons... It's hard to get someone to write a letter saying 'I think the floor should be such and such a percent' or whatever." "When you put out a grassroots notice for everybody to get a hold of legislators," explained a provider representative in New York State, "you don't steep yourself in the details a lot, because you'll simply lose people; the old KISS method, 'Keep It Simple Stupid'... It's hard to transmit a message at a grassroots level that gets too complicated." Action alerts, which reach out to people about specific issues, may be useful in activating broader networks of individuals and organizations to generate letters and emails with the aim of moving policy by getting policymakers to take notice. "We are a coalition of groups and individuals," reported one New York advocate. "Its very important to bring people together at least on a common issue to create a kind of summit of stakeholders that can fight, because if you don't have money, if you have numbers, you might affect change... We have lots and lots of people who join our action alert, and we can generate letters and emails... That's the way we got the quality pools into the Governor's Office. He got over 400 emails across that state from residents and people. It made a huge difference." In addition to writing emails and letters, advocates in Minnesota, at least, have occasionally been effective at stimulating large numbers to lobby state legislators and their staffs directly on behalf of residents' interests. This has occurred primarily under the auspices of AARP who make their members visible by having them wear buttons and red t-shirts on designated lobbying days and, during the last legislative session, was successful in using robo-calls to stimulate volunteer leaders to make personal visits to lobby against the appeal of rate equalization. One Minnesota advocate reported that, "AARP has always been able to get anywhere from 100 to 200 people to show up at the lobby days to support those initiatives and to visit with legislators and hand out materials." Now it should be emphasized that not all forms of communication are created equal; some have more credibility than others. "Each thing has varying weight established to it," explained one legislative staffer. "There's the personalized e-mail, there's the form e-mail; there's the postcard that's just sent; there's the actual letter that's written. I would say that the postcard is minimal; the form e-mail is minimal; the actual e-mail that's sent is stronger if someone takes the time to actually handwrite a letter, but who does that anymore? And if you make a phone call, that's actually probably the strongest." Even stronger than phone calls, other interviewees observed, is individual personal contact with legislators. Other strategies with which to increase the likelihood of policy impact include developing coalitions and relationships with other key constituency groups, whether in the way of additional consumer-oriented organizations, unions, or individual providers and/or the industry associations that typically represent them. Let's begin with consumer-oriented coalitions, which while important in New York, have played a somewhat lesser role in Minnesota. As noted previously, key to consumer advocacy in New York has been the Long Term Care Community Coalition. The Long Term Care Community Coalition is a coalition comprised of over 20 organizations, including various advocacies, professional associations, and civic groups. Although Coalition staff take the point on nursing home reimbursement, the Long Term Care Community Coalition draws strength and support from its membership. This is manifested in a number of ways, including informing and providing feedback on Coalition strategy, reinforcing the lobbying strength of the Coalition, and enhancing the perceived legitimacy of efforts made on the Coalition's behalf. The Long Term Care Community Coalition translates information for other organizations that don't have the level of expertise that they have. This enables the Coalition's constituency members to provide productive input that can then be used to inform Coalition staff participation in higher level discussions with policymakers and other stakeholders. "If the state had done our quality pools," it was explained by way of example, "the Long Term Care Community Coalition would then have convened a subcommittee and presented the issues that the Department of Health and the state were looking at and then led a discussion with its membership on how to proceed in terms of priorities, impact, etc., and then brought what was agreed upon in those discussions back to the table with the state." Another advantage of the Long Term Care Community Coalition's structure is that it promotes further dissemination of the organization's messages about reimbursement and other issues to policymakers and other state officials. This can be through the action alert driven communication discussed earlier, or through direct contact with state legislators and agency officials. "Other groups come to us and ask questions," reported Coalition staff, "and so when the AARP, for example, goes to visit a legislator, they have the information they need on reimbursement though they're focused on so many other issues." "Developing allies in other organizations that can chime in with you is important for influencing policy," explained one legislator. "One of the things that I've stressed to the Coalition is that while they have very limited resources for bringing masses of people to Albany, AARP brings up busloads of people practically every week, and so I've always urged that the Coalition do whatever they can to encourage AARP to take on the Coalition's agenda... Because there's no way that the Coalition is going to have the resources to bring scores or hundreds of people in bright red t-shirts into the legislative office building every week. But AARP does that... Its very effective. You can tell from the other end of the block, 'Oh, the AARP people are here,' because there's scores of people in bright red t-shirts." Finally, being organized as a coalition helps increase the perceived legitimacy of the Long Term Care Community Coalition's work; that Coalition staff are not just representing one organization but all the Coalition's constituent membership. "They do work very hard to be a coalition," reported one observer, "that they're representing a broad array of consumer interests, and it's not just one or two voices using a platform of one organization to bring about a point of view, it's a real consumer position that's been developed." Now let's turn to the formation of coalitions between consumer advocacy groups and unions representing direct care staff. In contrast to New York, the key to recent advocacy over reimbursement in Minnesota has been the development of Seniors & Workers for Quality Care, a coalition between consumer advocates and union representatives. This Coalition includes most senior-related groups in Minnesota, such as AARP, the Alzheimer's Association, ElderCare Rights Alliance, and Older Women's League, not to mention the Union Coalition of Long-Term Care Workers, which includes SEIU, the American Federation State, County, and Municipal Employees, and other Unions. Consumers and unions emphasize together that Minnesota requires a countervailing weight to the dominant interest of the nursing home industry. Reported one Union representative, "I would say citizen advocacy groups that partner with labor organizations have a lot more clout than they would have otherwise... I would say we are the sort of balance to the industry trade group... We both advocate for greater funding for nursing homes, but the providers tend to focus more on just sort of the generic needs of the industry, while we try to emphasize the needs of consumers and the workers who actually work in the homes." The perception is that Seniors and Workers for Quality Care has proven effective, particularly in encumbering additional state funding appropriated to nursing homes for workers' salaries and benefits. Seniors and Workers has also led the fight opposing the repeal of the state's rate equalization law. Reported one union representative: "The consumers and the workers came together and said, 'We've got a common interest in making sure that the money going into nursing homes gets to the front line caregivers, because that makes the biggest difference in their lives.' And so, we've got language that said when there's new money, a certain amount of it must go to front line caregivers in the form of increased wages and benefits. And the industry hates that. The other big thing is rate equalization, which says that you can't charge private pay people more than you charge public Medicaid people, which Minnesota and North Dakota are the only two states that have that." Now let's consider potential coalitions between consumer advocates and individual nursing home providers and/or their associations. Most interviewees in New York and Minnesota agreed that working with providers would be extremely effective. Yet, for most, this was a difficult thing to accomplish and, as such, has been little used so far. This is largely because existing relationships with providers around reimbursement and quality issues tend to be adversarial, though advocates reported working with individual providers, but rarely around reimbursement. A number of suggestions were made to improve the relationships between advocates and providers. This included distinguishing among different types of providers--some may be more productive and natural coalition partners than others. It also included: finding common ground around issues related quality, spending levels, and mission; incorporating provider input into advocates' proposals for reforming the way nursing homes are paid; not unduly antagonizing providers--that is, being more empathetic to the realities of running a nursing home, particularly in an increasingly difficult funding environment; and, where possible, co-opting providers' positions in such a way that they complement your own. So, in general, interviewees in both states suggest that providers and advocates rarely come together, particularly on reimbursement issues. This dynamic was nicely summarized by a legislative staffer in New York: "The consumer groups are very clear that they're kind of in most cases at war with the providers, so it's very rare where they join up with them... The relationship between the advocates and provider groups is inherently tense. That's by nature, the provider is going to want to do everything they can to make money, and many of the things that a consumer group pushes for will be things that cost the provider money." Concurred a provider representative in Minnesota, "Part of it is the dynamic that grew up here over the years where consumers consistently were on the other side of the table from providers. That has proven a difficult bridge to gap." Although predominately adversarial, interviewees felt that it was important for advocates to develop better relationships with at least some providers, particularly if they wanted to make more progress on certain issues than they have to date. Believed one New York advocate, "The advocates have to stop seeing the parties as black and white, bad and good... You have to leave your judgments of people...your old mental models at the door; you have to be open, and engage people on a common basis... There's far too much of, 'The providers the bad guys, we're the good guys. They're the enemy. It's our job to make them uncomfortable.' That can't work...There just has to be far more dialogue." Indeed, despite the general antagonism that exists, the relationship between the advocates and some providers is better than the relationship between the advocates and others. This is true in both New York and Minnesota. In Minnesota, for example, a leading advocate used to have informal lunches with good friends in the states' provider associations, at which time progress in reconciling the advocacy and provider views on certain reimbursement issues took place. In New York, the Long Term Care Community Coalition and other advocates used to sit down on a regular basis with representatives of one of the provider associations to work on various issues together, though these interactions tended to be around survey and certification rather than reimbursement and, by mutual agreement, ended once progress on the issues discussed stopped being made. Perhaps the varying relationship between the providers and the advocacy groups is best relayed through the following observations by a legislative staffer in New York around the state's recent Nursing Home Reimbursement Work Group: "On the work group she had a very good working relationship with two or three of the nursing home representatives. Generally, they were in New York City, and believe it or not, large, private pay institutions with higher rates of quality. If she is sitting there talking about quality, and on all these measures of quality, you're going to score very well, then you would like this proposal. She would generally have support amongst those members. Amongst those members who were either on the Board of one of the industry groups, or amongst the members who were in the industry groups, she generally had less support, and they would just kind say, 'Oh, that's her,' and some would almost go so far as to ignore her." This suggests that while there are some providers or provider groups advocates are unlikely to develop collaborative relationships with, there are others who may prove to be productive partners in this regard. Said one New York advocate, 'There are always people that are visionary, that you can work with, what we call 'leading change'. You can find those people, if you really seek them out... Don't indict an entire industry, because they are not all alike. There are some very good nursing homes in this state that are trying to do some really amazing things." When identifying providers to work with, it is helpful to identify areas of common ground. More generally, this may be with respect to mission; more specifically, with respect to quality and performance and, perhaps, overall spending levels on nursing homes. This was the position of several interviewees, including one provider who suggested that, "a good working relationship would be to have periodic discussions as groups, the nursing homes with the consumers, to list priorities for each group, and to agree to work on those we can agree to work on together. It would make sense to issue joint statements to do things like that, because I think a united front, especially when you're dealing with budget cutters is very important. One example where advocates have collaborated successfully with providers is in relation to workforce policy in Minnesota. Reported one advocate, "By the 1980s there had been a number of sessions in which consumers to some extent were able to exercise power by aligning with the industry. One situation where the industry and consumers have worked on the same side was to put some restrictions on what temporary nursing services could charge for their nursing assistance and what not. We're worked on a number of other staffing reimbursement-related issues as well." One advocate highlighted the desirability of seeking provider input into your proposals. This may generate good will and trust in addition to helping to separate providers who are willing to collaborate from those who are not: "Instead of saying, 'You're not doing X,' it should be a question, 'What do you need in or to do that?' And if they say, 'I'm not going to do it at all,' fine, you can write them off. If they want to do it, that is improve care, Where should we start? How do I help you get what you need to do that? That's an entirely different frame. So we wrote a proposal for change. We then went to key nursing home administrators, and showed it to them, and said, 'We don't want to hurt you in this proposal. What do we need to do to make it okay for you? How can we help you transition to something else?' And they told us, and so we put it in our proposal, and then we met with them individually. We're continuing to meet with them. People that we consider real leaders in the nursing home community." Several interviewees stressed the importance of not unduly antagonizing the other side, recognizing that although there may be substantial disagreement on certain issues, there may be some providers or provider groups that may otherwise be willing to work with you to further positive change. "When the Department of Health sets up a table to review how they're going to distribute this money," explained one consumer advocate, "I think you have to be very careful in your language that you don't indict all the providers in ways that are not constructive. You can't come to the table and say they're all crooks, and they're all overpaid, and have people want to work with you. I would prefer to see a better tone of conversation. I don't think you always have to be adversarial." Alternatively, there may be ways to garner provider support or minimize their opposition by framing their arguments in such a way that they naturally complement your own. This has occurred in New York, according to one legislative staffer: "You want even your opponent's argument to work your cause. In the nursing home realm, and I've seen her do this, where she will be in an argument with an operator over an issue having to do with reimbursement... She can easily take their argument, turn it, and give it back to them on a plate that is the consumer interest plate, with their interest as a complementary piece. And I've just seen her take the floor right out from under an operator in that type of situation in the taskforce setting." So, what are the take away lessons vis-a-vis consumer involvement in Medicaid nursing home reimbursement policy making at the state level. In short, findings suggest the importance of developing, demonstrating, and volunteering expertise in nursing home reimbursement as a means of gaining credibility as a legitimate actor, which, once earned, will lead to an ongoing role in state reimbursement policy discussions. They also suggest strategies for using that knowledge and credibility for effectuating change. These include volunteering and/or insisting on participating on state work groups and taskforces targeting reimbursement. They also include developing and accessing relationships with key public officials in the legislative and executive branches of state government, in addition to supplementing taskforce memberships and stakeholder meetings with various grassroots activities that draw more widespread attention to an issue. Here, a division of labor may be useful with those advocates becoming expert in reimbursement partnering with other organizations capable of marshaling the resources necessary to conduct mass rallies, letter writing, e-mail, and other broad-based endeavors. Thus, according to a provider representative in New York, "There needs to be a core competency such that an organization has to first develop content knowledge of what is the relationship between reimbursement and quality. That's job number one. Number two is you need to develop relationships with the key influencers in the Legislature and the state and the executive branch, and then three, develop the ability to mobilize constituents to reach those people, so that they're hearing your message from the grassroots. And four, becoming proficient in the necessary skills to communicate effectively, and to advocate effectively, not just to have a relationship, but have a relationship that you leverage into persuasion by your ability to do advocacy, and kind of communicate that relationship between reimbursement policy and quality. A nice summary was also provided by a consumer advocate in Minnesota: "Our success has largely been a matter of trying to cultivate champions at the Legislature among people who had enough power in their committees to be champions... Our groups have also served as interveners on the side of the Department of Health in court hearings... It's been a matter of finding our friends in public office, and in the state agencies, and doing what we can to understand what the issues are, and to understand how decisions will be made so that we can elbow our way into the decision making process." For additional information on the content reviewed in this or any of the other modules in this online series, you may contact Cynthia Rudder at cynthia@ltccc.org, and Eddie Miller at edward.miller@umb.edu.

Increasing Consumer Involvement in Medicaid Nursing Facility Reimbursement Edward Alan Miller, Ph.D., M.P.A. University of Massachusetts Boston Cynthia Rudder, Ph.D. Long Term Care Community Coalition Module 5: Influencing Nursing Home Reimbursement III The Commonwealth Fund Grant #20110033 Supplements to Higher Level Participation Supplemental Activities Grassroots Strategies Newsletters; Press releases; Press coverage Action alerts; Email/letter writing campaigns Mass rallies; Legislative Lobbying Days Developing Coalitions/Relationships with Other Key Constituency Groups Consumer-oriented groups Unions Provider organizations Grassroots Strategies Complements Higher Level Activities Let Decision Makers Know You Have People Behind You, So They Should Pay Attention “We first try to see if we can get the powers that be to be somewhat responsive. If they’re not responsive we have to go after them. It’s something we have in reserve.” --Consumer Advocate, NY “The vast majority of legislative offices, numbers count a lot more, and so if advocates are going to be effective, they not only need a quality message…they also need to focus on having a large, popular base, as well, that can voice their message.” --Legislator, NY Big Issues, Simple Messages When Undertaking Grassroots Lobbying, Focus on Bigger Issues People Can Connect Too “We only go to grassroots when it’s really bigger issues that…[people] connect to. You can connect to quality pools; you can even connect to add-ons. It’s hard to get someone to write a letter about [floors and ceilings].” --Consumer Advocate, NY “When you put out a grassroots notice for everybody to get a hold of legislators, well, you don’t steep yourself in the details a lot, because you’ll lose people; the old KISS method, ‘Keep It Simple Stupid.’” --Provider Representative, NY Action Alerts, Letters, Emails Letters/Emails Can Get People to Pay Attention “We are a coalition of groups and individuals…Its very important to bring [people] together at least on a common issue [to] create a kind of summit of stakeholders that can fight, because if you don’t have money, if you have numbers, you might affect change…We have lots and lots of people who join our action alerts, and we can generate letters and e-mails...That’s the way we got the quality pools into the Governor’s Office. He got over 400 emails across that state from residents and people. It made a huge difference.” --Consumer Advocate, NY Mass Rallies, Lobbying Days Stimulate Large Numbers to Lobby State Legislators and Their Staffs Directly “AARP has always been able to get anywhere from 100 to 200 people to show up at the lobby days to support those initiatives and to visit with legislators and hand out materials.” --Consumer Advocate, MN Efficacy of Communication Varies Some Forms of Communication Have More Weight Than Others “Each thing has varying weight established to it: There’s the personalized e-mail; there’s the form e-mail; there’s the postcard that’s just sent; there’s the actual letter that’s written. I would say that the postcard is minimal; the form e-mail is minimal; the actual e-mail that’s sent is stronger if someone takes the time to actually handwrite a letter. Who does that anymore? And if you make a phone call that’s actually probably the strongest.” --Legislative Staff, NY Developing Coalitions and Relationships with Other Key Constituency Groups Consumer-Oriented Coalitions Important in New York Key to Advocacy Over Reimbursement in NY: The Long-Term Care Community Coalition Drawing Support from Other Consumer Groups Informing strategy, providing feedback Expanding lobbying strength Enhancing perceived legitimacy Inform Strategy, Provide Feedback Translating Information for Other Groups Which, In Turn, Provide Productive Input “If the state had done our quality pools [the LTCCC] would then [have convened] a subcommittee and [presented] the issues that the Department of Health and the state [were] looking at and then [led] a discussion with [its membership] on how to proceed in terms of priorities, impact, etc., and then [brought what agreed upon in those discussions] back to the table [with the state].” --Consumer Advocate, NY Expand Lobbying Strength Activating Members Promotes Dissemination of the Coalition’s Message to Policymakers/Officials “Other groups come to us and ask questions, and so when the AARP goes to visit a legislator they have the information they need on reimbursement though they’re focused on so many other issues.” --Consumer Advocate, NY Expand Lobbying Strength Activating Members Promotes Dissemination of the Coalition’s Message to Policymakers/Officials “Other groups come to us and ask questions, and so when the AARP goes to visit a legislator they have the information they need on reimbursement though they’re focused on so many other issues.” --Consumer Advocate, NY “Developing allies in other organizations that can chime in with you [is important to influencing policy]…the Coalition has very limited resources for bringing masses of people to Albany. AARP brings busloads…practically every week.’” --Legislator, NY Enhance Perceived Legitimacy Not Just Representing One Organization But All Members within the Coalition’s Membership “They’ve worked very hard to engage their membership, and I think it’s also understood and recognized that they’re representing a broad array of consumer interests, and it’s not just one or two voices using a platform of one organization to bring about a point of view, it’s a real consumer position that’s been developed.” --Consumer Advocate, NY Unions Important in Minnesota Key to Advocacy Over Reimbursement in MN: Seniors & Workers for Quality Care Seniors & Workers for Quality Care Senior Organizations AARP, Alzheimer’s Association, ElderCare Rights Alliance, Older Women’s League, Minnesota Adult Day Services Organization, National Association of Social Workers, etc. Union Coalition of Long-Term Care Workers Service Employees International Union (SEUI), Untied Food and Commercial Workers, American Federation of State, County and Municipal Employees, United Steel Workers, etc. Countervailing Weight Consumers and Unions Emphasize Workers and Residents’ Needs Rather than Industry Interests “I would say citizen advocacy groups that partner with labor organizations have a lot more clout than they would otherwise…I would say we are the sort of balance to the industry trade group…We both advocate for greater funding for nursing homes, but [the providers] tend to focus more on just sort of the generic needs of the industry, while we…try to emphasize the needs of consumers and the workers who actually work in the homes.” --Union Representative, MN Wage Encumbrance, Equalization Proven Effective Encumbering State Funding for Workers; Has Led Fight Over Rate Equalization “The consumers and the workers came together and said, ‘We’ve got a common interest in making sure that the money going into nursing homes gets to the front line caregivers, because that makes the biggest difference in their lives.’ The other big thing is rate equalization, which says that you can’t charge private pay people more than you charge public MA people, which Minnesota and North Dakota are the only two states that have that.” --Union Representative, MN Nursing Homes Potentially Effective But Not Used Much Most Interviewees in NY and MN Agreed Working with Providers Would Be Effective Difficult to Accomplish, However Extant relationship is generally adversarial Been able to work with some individual providers Develop a Better Relationship with Providers Distinguish among different types of providers Find common ground around quality, spending, mission Incorporate provider input into proposals Do not unduly antagonize providers Co-opt providers positions so they complement yours Relationships Generally Adversarial Providers and Advocates Rarely Come Together, Particularly on Reimbursement Issues “Part of it is the dynamic that grew up here over the years where consumers consistently were on the other side of the table from providers. That has proven a difficult gap to bridge.” --Provider Representative , MN “[The consumer groups] are very clear that they’re kind of in most cases at war with the providers, so it’s very rare where they join up with them…[The relationship is] inherently tense. That’s by nature, the provider is going to want to do everything they can to make money, and many of the things that a consumer group pushes for will be things that cost the provider money.” --Legislative Staff, NY Developing Better Relationships Important to Improve Relations with Providers to Make More Progress on Issues “[The advocates] have to stop seeing the parties as black and white, bad and good…You have to leave your judgments of people…your old mental models at the door; you have to be open, and engage people on a common basis…There’s far too much of the providers are the bad guys; we’re the good guys. They’re the enemy. It’s our job to make them uncomfortable; that can’t work…There just has to be far more dialogue.” --Consumer Advocate, NY Not All Relationships Are Created Equal Relationship Between Advocates and Some Providers Better Than Others: Both NY & MN Not All Relationships Are Created Equal Relationship Between Advocates and Some Providers Better Than Others: Both NY & MN “[On the Work Group she] had a very good relationship with…two or three of the nursing home representatives. Generally, they were New York City, and believe it or not, large, private pay institutions who had higher rates of quality…Amongst the members who were [associated with] the industry groups, she generally had less support, and they would just kind of [say], ‘Oh, that’s [her],’ and some people would almost go so far as to almost ignore her.” --Legislative Staffer, NY Identify Providers You Can Work With Need to Identify and Offer to Collaborate with Providers Who You Can Work With “There are always people that are visionary, that you can work with, what we call ‘leading change.’ You can find those people, if you really seek them out…Don’t indict an entire industry, because they’re not all alike. There are some very good nursing homes in this state that are trying to do some really amazing things.” --Consumer Advocate, NY Find Common Ground Need to Identify and Offer to Collaborate with Providers Who You Can Work With “A good working relationship would be to have periodic discussions as groups, the nursing homes with the consumers, to list priorities for each group, and to agree to work on those we can agree to work on together. It would make sense to issue joint statements to do things like that, because I think a united front, especially when you’re dealing with budget cutters is very important.” --Provider Representative, NY Collaboration in MN Providers and Advocates Have Collaborated to the Benefit of Consumers in MN “By the 1980s there had been a number of sessions in which consumers to some extent were able to exercise power by…aligning with the industry…[One situation] where the industry and consumers [have worked] on the same side [was] to put some restrictions on what temporary nursing services could charge for their nursing assistance and what not. We’ve worked on a number of [other] staffing reimbursement-related issues [as well].” --Consumer Advocate, MN Incorporate Provider Input Seek Out Provider Input Into Reform Proposals; Generates Good Will, Identifies Collaborators “Instead of saying, ‘You’re not doing X,’ it should be a question, ‘What do you need in order to do that?’ And if they say, ‘I’m not going to do it at all,’ fine, you can write them off. If they want to do it, i.e., improve care. Where should we start? How do I help you get what you need to do that? That’s an entirely different frame.” --Consumer Advocate, NY Do Not Unduly Antagonize Providers Doing So May Not Be Productive, Particularly Since Some Providers May Otherwise Be Willing to Work With You “When…the Department of Health sets up a table to review how they’re going to distribute this money, I think you have to be very careful in your language that you not indict all the providers in ways that are not constructive… You can’t come to the table and say they’re all crooks, and they’re all overpaid…and have people want to work with you…I would prefer to see a better tone of conversation. I don’t think you always have to be adversarial.” --Consumer Advocate, NY Co-opt Providers’ Positions Frame Providers’ Arguments in Such a Way That They Naturally Complement Your Own “You want even your opponent’s argument to work for your cause…In the nursing home realm, and I’ve seen [her] do this, where she will be in an argument with an operator over an issue, having to do with reimbursement… She can easily take their argument…turn it, and give it back to them on a plate that is the consumer interest plate with their interest as a complementary piece. And I’ve just seen her take the floor right out from under an operator in that type of situation in the taskforce setting.” --Legislative Staff, NY Take Away Lessons Summary Prerequisites for Consumer Action Develop a reputation; Make reimbursement a Priority Develop, demonstrate, and volunteer knowledge Primary Strategies for Consumer Action Develop and access relationships with state legislators Develop and access relationships with state bureaucrats Participate in reimbursement work groups and taskforces Supplemental Strategies for Consumer Action Grassroots strategies: Action alerts, email, letters Develop coalitions with other consumer-oriented groups Develop coalitions with unions and provider groups Putting It All Together: NY “[The There needs to be a] core competency such [that] an organization has to first develop content knowledge of what is the relationship between reimbursement and quality. That’s job number one. Number two is you need to develop relationships with the key influencers in the Legislature and the executive branch, and then three, [develop] the ability to mobilize constituents to reach those people, so that they’re hearing your message from the grassroots. And four, becoming proficient in the necessary skills to communicate effectively, and to advocate effectively, not just to have a relationship, but have a relationship that you leverage into persuasion.” --Provider Representative, NY Putting It All Together: MN “[Our success] has largely been a matter of trying to cultivate champions at the Legislature among people who had enough power in their committees to be champions….Our groups [have also] served as interveners on the side of the Department of Human Services in…court hearings…It’s been a matter of finding our friends in public office, and in the state agencies, and doing [what] we can to understand what the issues are, and to understand how decisions will be made so that we can elbow our way into the decision making process.” --Consumer Advocate, MN Contacts Cynthia Rudder, Ph.D., Long Term Care Community Coalition cynthia@ltccc.org http://www.ltccc.org/ Edward Alan Miller, Ph.D., M.P.A., University of Massachusetts Boston edward.miller@umb.edu http://www.umb.edu/academics/mgs/faculty/edward_miller/