| The latest news from and for state health care advocates |
June 2011 |
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In each edition, we'll feature an action, victory, campaign, or interesting tactic shared by a state advocate. Send us your updates. |
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In This Issue:
Buzz around the States
Michigan Consumers for Healthcare Advancement has created a series of fact sheets detailing how the Affordable Care Act affects various demographic groups.
The Commonwealth Fund released a new report on the status of state health exchanges, including a color-coded map.
Citizen Action of Wisconsin launched The Battleground Wisconsin Podcast.
Missouri groups rally for a fair deal on Medicare, Medicaid, and Social Security.
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States in Focus
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Engaging the disability community in work around health care issues and the Affordable Care Act can lead to the development of creative campaigns with compelling spokespeople. Sally Jo Snyder and CHC find that the best way to engage this community is through fostering genuine relationships and connecting people with disabilities with actions around the specific health care issues that affect their daily lives.
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Making Good Ripples in the Disability Community
For years, the Consumer Health Coalition (CHC) in Pittsburgh, Pennsylvania has successfully organized and engaged the disability community on a variety of health care issues. Sally Jo Snyder, Director of Advocacy and Consumer and Engagement, works to ensure that people with disabilities have a platform for voicing their concerns regarding health care. One outlet that Sally Jo and the CHC have developed is the Creative Advocacy Project, which allows consumers to advocate for health care services through the arts.
In April, CHC launched the “Shirt off My Back” campaign through the coalition’s Creative Advocacy Project. The campaign focuses on what “home” means to people with disabilities, which is particularly important in light of the major cuts to home- and community-based services that were made by the Pennsylvania state legislature this year. Participants in the campaign created T-shirts that told compelling stories about what being able to stay in their homes meant to them. The T-shirts have been shown in visual displays and reproduced on postcards for state legislators. Participants have worn these shirts to town halls, forums, and lobby days as well. This campaign garnered a great deal of attention and put a face on the beneficiaries of home- and community-based services.
Developing creative outlets for advocacy and genuine relationships with individuals were essential elements of the “Shirt of My Back” campaign, and these elements are also important for engaging the disability community more generally in advocacy. By making sure people with disabilities have “ownership” of the campaign, they can serve as great spokespeople and drive home the very personal nature of health care issues. Ultimately, Sally Jo credits the success of the campaign to the mutual respect that existed between the organization and the disability community.
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Even in the most challenging state atmosphere, the consumer voice can be very powerful. Florida advocacy groups took advantage of what little room there was for public participation in their waiver process to make a big splash and grab the attention of key players in the decision-making process.
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Consumers Stand Up against Medicaid Privatization in Florida
In the midst of an intense effort in Florida to privatize the Medicaid program, consumers have come out in full force to stand up in opposition to the proposed changes. During this session, the state legislature passed a law that would have the state seek a waiver to build on a failed experiment with privatization. However, before the waiver proposal could go to CMS for approval, the state had to conduct a process to solicit public input on the issue. So, Florida CHAIN and a network of advocates got to work to attend the 11 public meetings that were set up around the state.
The groups sought to make the process transparent for consumers and to get anybody and everybody they could to attend these meetings. They posted information about the meetings online and spread the word through Twitter and Facebook and their organizational partners. Laura Goodhue, Executive Director of Florida CHAIN, described the groups involved in this effort as representing a broad range of Floridians, from women to seniors to mental health consumers. Together, these groups were so successful that hundreds of consumers showed up at the public meetings across the state, leaving standing room only. CHAIN was also able to get Medicaid beneficiaries from the counties that went through privatization in the pilot project to tell their stories at these meetings, painting a realistic and grim picture. This strong consumer involvement got a lot of attention in the media and from legislators.
Advocates used these hearings as a platform for a bigger campaign that is designed to defeat the waiver at the federal level. CHAIN and their key state partners will provide comments to CMS about the negative impact on consumers of this type of privatization. The groups also plan to circulate sign-on letters, and through a new online tool that is soon to be launched by Progress Florida, they plant to urge groups to submit comments directly to CMS. Laura is confident that CMS will hear their message loud and clear and hopes that CMS will ultimately decide to protect consumers in Florida and reject further privatization.
See news clips from the meetings here.
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If the implementation process in your state lacks transparency, consider partnering with a wide range of groups, including universities and foundations, to hold public forums. By inviting agency officials to speak at forums in Ohio, the advocates acquired invaluable information and are in a much better position to continue inserting the consumer voice in the process moving forward.
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Public Forums in Northeastern Ohio Delivered Real Results
Since Governor Kasich took office earlier this year, advocates in Ohio have worked tirelessly to get information on the progress the state is making in implementing the Affordable Care Act. They were successful in some regards, but they still struggled with the lack of transparency. When phone calls and email correspondence with the governor’s office weren’t enough, the Universal Health Care Action Network of Ohio (UHCAN Ohio) partnered with Kaiser Permanente, Sisters of Charity Health System, and Mt. Sinai Health Care Foundation to organize a series of public forums at Cleveland State University.
Gary Benjamin, advocacy coordinator at UHCAN Ohio, asked the university to tackle the task of organizing these forums on implementation issues (such as the exchange and delivery system reform) in May and June as part of their free, biweekly public forums. By cohosting the forums with the university and foundations, UHCAN Ohio could easily publicize the events through their partners’ newsletters, establish more legitimacy with the governor’s office, and obtain media coverage, including Cleveland’s largest newspaper, The Plain Dealer, and NPR.
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The first forum, which was attended by a representative of the insurance department, proved to be a great venue for advocates to express their views and learn important information. Speakers talked about ways that the state can make the exchange friendly to consumers and small business owners, and they revealed what they had found out about what steps the governor has taken to establish the exchange. For example, attendees learned that the state recently contracted with consulting firm Milliman to research a variety of exchange and private market issues. With this new information, advocates set up a meeting with Milliman to learn more about the contract and insert the consumer voice in the process.
The public forum series in Cleveland also raised the profile of the policy expertise and the value of the experience of the health advocacy community, which made the time and resources that UHCAN Ohio had put into the process well worth it. Now, advocates are better situated to engage key decision makers on implementation over the long term.
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Beat of the Month
Despite it all, Life Goes On (Noah and the Whale).
Advocate Tip:
Recess Message: Don’t Cut Medicaid
As members of Congress come home in July, it may be your last chance for in-district contact before they have to make important decisions on deficit reduction in August. The health care community needs to present a unified message to all members. There are a lot of different deficit reduction proposals floating around that would cut Medicaid using different mechanisms. But our message should be simple, clear, and united: Don’t Cut Medicaid.
To help you make that argument, use Families USA’s latest report, Jobs at Risk: Federal Medicaid Cuts Would Harm State Economies.
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New Resources from Families USA and Stand Up for Health Care
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