Primary Care Advocacy Tool Kit

Consumer and Community Organizing on Health Care:
Opportunities for Collaboration and Action  

Marcia Hams
Deputy Director, Programs
Health Care for All
30 Winter Street, 10th Floor
Boston, MA 02108
Tel: 617-350-7279, Fax: 617-350-7545

Contents

• Introduction
• Background
• Discussion (Consumer and Community Activism to Improve Care: Identifying the Shared Agenda with Primary Care Providers)
• Examples: (Consumer and Community Organizing on Access Dimensions of Primary Care)
• Discussion 2: (Understanding and participating in community organizing and advocacy: The challenge for primary care providers)
• Bibliography and Resources
• Web Based Resources

Introduction

Organized health care consumers and communities are engaged throughout the country in a wide range of work to improve health care access and quality of care, to expand public health, and to reform the health care system. These consumer and community-based efforts have succeeded in making changes in both public and private institutional policies in health care in many of the areas that are central to the Primary Care Futures project. In some cases these initiatives have included provider allies, including physician groups, health centers, nurses, and hospitals. Based on the priorities they have demonstrated through their work, consumer organizations and coalitions are important potential partners for primary care providers who want to influence policy to support the kind of health care system envisioned by the Futures project.

Background on Consumer based reform in health care

Consumer based reform efforts are being led by state-based groups (examples are Health Care For All in Massachusetts, Maine Consumers for Affordable Health Care, Washington Citizen Action, Oregon Health Action Campaign, and Universal Health Care Action Network, Ohio) by national groups and regional groups (examples are Community Catalyst, Consumers Union, Families USA Foundation, the Northwest Federation of Community Organizations and the National Association of Child Advocates), and by local community organizations and coalitions. In 1999 The Access Project, a national initiative of The Robert Wood Johnson Foundation, surveyed 5,000 individuals and organizations and confirmed the existence of hundreds of these local community efforts, which focused on (1) obtaining coverage for the uninsured (2) increasing access to services at the local level and (3) improving public health. (Access Project, 6/99)

These local, state and national groups are addressing the many parts of the U.S. health care “elephant” ---our complicated and fragmented health care system. There is considerable variation in the approaches and orientation of these organizations. Some groups are focused primarily on responding to particular problems in the system, such as a hospital closing, the need to expand coverage for more of the uninsured, the need for interpreter services and cultural competency in health care institutions, the shortage of primary care providers in a rural or low-income areas, the need to regulate managed care to protect quality of care, especially for groups such as children with special needs, or addressing the asthma epidemic in urban areas. Some groups, while working on these same types of issues, see their efforts as contributing to the longer term goal of implementing a universal health care system, at least at the state level if not the national level. There are also multi-issue community organizing groups, some connected to national networks such as the Industrial Areas Foundation, ACORN and USAction, which are working to improve health care access as part of their broader agenda to win economic and social justice for low income communities.

Consumer and Community Activism to Improve Care: Identifying the Shared Agenda with Primary Care Providers

Consumer and community groups would find a great deal to champion in the definition of primary care put forward by the Institute of Medicine in 1996:

Primary Care is the provision of integrated, accessible health care services by clinicians who are accountable for addressing a large majority of personal health care needs, developing a sustained partnership with patients and practicing in the context of family and community.

Consumer and community organizations would also find the paper (unpublished) by Cary, Goldberg and McDaniel on consumer views of key attributes of primary care both familiar and illuminating. The paper reviews a broad range of studies, in which all types of consumers were surveyed, including women, low-income people, patients with special health care needs, people who are limited English speakers, as well as people of color. The authors found that consumers value health care that is accessible, accountable, coordinated, comprehensive, and provides continuity of care. A summary of their results is a useful checklist in looking at opportunities for collaboration between primary care providers and initiatives undertaken by community groups.

From A. Cary, B.Goldberg and S.McDaniel, “Consumers and Primary Care” (unpublished)

These authors go on to recommend specific areas of policy change to “close the chasm between primary care providers and consumers.” They recommend changes in provider education, additional research and policy evaluation, and changes in practice to incorporate “best practices”, consumer input and community values into the system of care. Fortunately, providers can also look to the experience of consumer and community organizations themselves who have been attempting to change the system to reflect these values. The Access Project survey of groups actively engaged in health care organizing found that the following were their top priority health access issues (percentages are of survey respondents, and the response rate was 30% of 5000 surveyed). These issues closely parallel those identified by the Primary Care Futures project.

• Expanding health coverage - 38%
• Prevention/Public Health - 33%
• Extending Health services to the uninsured - 30%
• Improving Public Programs such as Medicaid - 27%
• Enrollment into Health Programs - 22%
• Reducing Barriers to Local Providers - 20%
• Rural Health Services - 13%
• Insurance Reform - 12%
• Transportation/Physician Accessibility - 12%
• Dental care - 10%
• Reduce Provider Shortages - 9%
• New Community Facility (e.g., health center) - 8%
• Hospital community benefits - 8%
• HMO community benefits, merger, conversion - 8%
• Hospital closure, merger, conversion - 6%

(The Access Project, 6/99, “Action Where It Counts”, pg. 11)

We present some specific examples of organizing and policy initiatives led by consumer organizations (click here to see examples), which have made progress in the policy areas identified as priorities by the Primary Care Futures project.  Consumer organizations may not identify “primary care” per se as the vision of the health care system they seek.  (Particularly, as Tony Schlaff points out, given the pejorative identification of primary care with the gatekeeper function in managed care).   However, if primary care providers become active participants or allies in such campaigns (as they have already in some cases), they will be in a position not only to make significant progress toward their own goals, but will be better able to engage in a dialogue with consumers on further steps toward a truly responsive health care system.  Such a dialogue will be strengthened by shared political experience, and hopefully, shared successes.  Indeed the experience of the last fifteen years is that consumer and community leaders, without initially having “policy expertise”, have increasingly become experts on reforming the system.  They have been directly listening to their fellow consumers, have been investigating specific barriers to care within existing institutions, finding the allies they need to make change and negotiating solutions that work.

The issues addressed by the examples of consumer initiatives presented for the most part affect those who are most vulnerable in the current system—those who do not have good access, whether due to financial barriers, cultural/linguistic barriers, geographic barriers or because of other special needs.   Solving these problems is essential for making the attributes of good primary care available to those most disadvantaged in the health care system.  But making progress on behalf of these consumers also can lead to system changes that impact all consumers.  As the papers developed for the Primary Futures Project indicate, however, the primary care attributes of access, comprehensiveness and accountability are not fundamentally incorporated into the health care system as a whole, for anyone. Even insured patients who are not low-income suffer from the system’s failure to implement preventive services of proven benefit, the continued exposure of people to expensive and even dangerous interventions, the over emphasis on technology, the inadequate attention paid to building partnerships between providers and patients, and the failure of many providers to see patients in the context of their communities.

Through the Primary Care Futures Project organized consumer and community groups, such as those in the previous examples, may be able to find provider allies for solving mutually identified problems in the current system of care. And primary care providers can look to the broad mix of health care consumer and community groups engaged in organizing and policy change to find partners as well.

Examples of Consumer and Community Organizing on Access Dimensions of Primary Care

Expanding health care coverage

Health Care For All, Massachusetts, led a successful broad based campaign in 1996 to raise the tobacco tax to expand coverage to all children in Massachusetts (through Medicaid and other programs) and for prescription drugs for low-income seniors and people with disabilities.   The coalition included senior advocates (Mass Senior Action Council), the American Cancer Society, the Massachusetts Medical Society, the Academy of Pediatrics, many other physician groups as well as tobacco control activists, the hospitals, insurers and some businesses.   Pediatricians in particular were active along with other members of the coalition in lobbying their local legislators—this district based action made a key contribution to the success of the campaign. This year (2001) a similar campaign, called Health Now! Massachusetts seeks to raise the tobacco tax for another major health care expansion for low-income adults.  The new effort is part of The Alliance for Healthy New England, a six state initiative to raise the tobacco tax to fund health care and tobacco control, which is being led by statewide consumer organizations, the American Cancer Society and the medical societies.  Other physician and provider groups are also key members of the coalitions.

United Power for Action and Justice, Chicago area, was organized in 1997 by the Industrial Areas Foundation, the organization founded in 1940 by Saul Alinsky. UPAJ has united 320 churches, synagogues, mosques, community organizations, union members and community health center leaders from Chicago and the surrounding suburbs. (www.tresser.com/ShelterForce.htm). Its first public meeting drew over 10,000 members, and one of its major initiatives is the Gilead Campaign for the Uninsured.  The campaign seeks to expand health coverage through (1) the Gilead Referral and Outreach Center to connect the uninsured to existing programs (2) expansion of Primary and Preventive Care by strengthening support for the existing network of private providers to complement public health efforts and (3) expansion of insurance coverage through Medicaid and access to private insurance. (www.tresser.com/gilead.htm)

Easily understandable information; no fear of stigmatization/ discrimination:

Following the expansions of coverage in Massachusetts and the national CHIP program the following year, AHEC/Community Partners, Health Care For All, legal service groups, immigrant organizations, hospitals, the medical society and state agencies have worked collaboratively to dramatically expand outreach and enrollment through community based organizations as well as at provider sites.  The ongoing input from community health workers, local providers and consumer advocates has helped the Medicaid agency in the state to make important changes in its administrative to address barriers to enrollment, improve the confusing rules of the managed care system, and reduce immigrant unfriendly practices that undermine use of services.  (See DeChiara, 1999)

Regular place and provider of care; flexible hours of care and “walk-in” capacity

The Maine Consumers for Affordable Health Care Foundation has organized consumer“ listening posts” (similar to focus groups) around the state as part of a national Community Catalyst project on quality of care funded by the Nathan Cummings Foundation in six states (Illinois, Maine, Oregon, Massachusetts and Tennessee.)   “The findings so far indicate that parents are generally satisfied with the services Maine offers, but that some problems remain, including lack of access to dental care, lack of “after hours care” and lack of access to mental health services.  In Oregon, the Oregon Health Access Project, is focusing on the survival of the state’s safety net system of clinics that serve those who face the most barriers to care.   Safety net providers had lost Medicaid funding to managed care plans when the Oregon Health Plan was implemented, but these plans have not served these new patients well. The OHAP has started a Committee on Safety Net Support to persuade the state to provide new funding for the clinics, since low income consumers report that “its clinics are the only places they are certain to receive quality care”.  (States of Health, Community Catalyst, Winter, 2001).

Ecu-Health Care is a project in North Adams Massachusetts, a rural community in Western Massachusetts with a high rate of uninsurance and no local community health center.  EcuCare was organized by physicians and church leaders who had sought to provide care to the uninsured through an organized network of physicians.   With the support of consumer advocates and community leaders, the group won state financial support to hire an administrator and for operating costs.  The local hospital provides space, and the physicians volunteer their services, agreeing provide free care to a specific number of uninsured patients.  (Standley and  Prottas, 1999).

In 1996, The Lynn Health Task Force, Lynn, MA, a community organization for over 15 years, made expansion of primary care capacity a central issue in its successful negotiations with Partners Health Care System, which sought the Task Force’s support when it proposed to purchase the only hospital in Lynn.  Partners committed to financing three new primary care physicians at the Lynn Community Health Center and subsidized the start-up of its new walk-in center, with evening and weekend hours.   Administrators, physicians, outreach workers and interpreters at the Health Center have been active supporters of this initiative.  In its ongoing collaboration with the hospital and health center, the Task Force continues to pursue further expansions in primary care in the city as well as in specialty physicians who will accept free care patients. 

Language/cultural/communication proficiency by providers

Through a 10 year campaign led by immigrant organizations, advocates, a new Latino legislator, and some progressive hospital leaders, Massachusetts passed a bill in 2000 that requires hospitals to provider interpreters in Emergency Rooms and in mental health facilities. Campaign supporters are now working to ensure that enough funding is included in the Medicaid budget and that new as well as existing programs receive adequate support.

The Covering Kids Project in Massachusetts, based at Health Care For All, produced a report on barriers to enrolling immigrants and refugees in MA health insurance programs, based on focus group meetings with consumers and community health workers.  It has recommended changes in federal and state policies, training for providers on cultural competency, and increased use of community health workers.  (Cook, B. and Health Care For All, October, 2000).

Geographic proximity

In rural Western Massachusetts, a local physician and community leaders began a voluntary physician network that has now evolved into the first health center serving the small “hilltowns” of the area. Massachusetts Senior Action Council, which has organized chapters of low-income seniors around the state, has made transportation to health care providers a major focus, and has collaborated with local health care coalitions local community hospitals have downsized or closed.

Easily understandable information

The Tennessee Health Care Campaign, as part of the Cummings Foundation supported national quality project, is focusing on parent education.  It has produced a video that explains how to enroll in Medicaid, explains Early and Periodic Screening, Diagnosis and Testing and why it is important for keeping children healthy, and describes how to file an appeal if coverage is denied for treatment after screening.   The video and accompanying training materials have been in great demand, and the state has now agreed to produce 20,000 information sets to distribute to providers who say they want to better understand how to meet the needs of low-income families. (States of Health, Community Catalyst:  Winter 2001)

Community Health Worker initiatives:  Throughout the country local community organizations and other advocates, often in conjunction with providers, have worked to expand the use of Community Health Workers in low income communities and for other groups who face barriers to care.  CHWs, trusted members of their communities,  can provide health education, enroll community members in programs, and provide the support they need to make connections to providers. A program in Milwaukee has helped detect and prevent illness from child lead poisoning, and Denver’s Home Visitation 2000 program provides visits to first time mothers and their infants during pregnancy and during the first two years of the child’s life. At Boston’s Codman Square Health Center, CHWs referred 1000 people needing health care to the Center in the first year, of which 62% were no/low income and were uninsured; most were people of color.  (CivicHealth Institute, Codman Square Health Center, 2001 and the Harrison Institute for Public Law, May 1997).   The HealthNow! Campaign underway in Massachusetts has proposed that if its tobacco tax initiative is passed, $10M of the revenue will be spent to expand the statewide pool of CHWs, with the goal of eventually incorporating their funding into the Medicaid rate in order to make CHWs a regular part of the health care team.

Understanding and participating in community organizing and advocacy:  The challenge for primary care providers

The Primary Care Futures Project has embraced goals for the health care system that are fundamentally at odds with the current system.   Yet in his introduction to the project, Tony Schlaff notes that “to many patients and community groups, providers appear to be politically indistinguishable from those who manage and pay for care.  In reality, there interests are different and should be much more closely aligned with those of consumer groups….Many providers, however, have failed to take action or make statements that clearly signal to patients and communities that they are unabashed advocates on their behalf." In order to send such signals, providers can seek to play and in some cases are already playing an active role in the kinds of initiatives mentioned in the previous sections.  Why, however, are such organizing efforts necessary to make the changes that consumers and progressive providers seek? Can't providers make these changes on their own?  Can consumers? And what are the characteristics of successful efforts and the skills needed to undertake them?   Community organizers and health care advocates have a wealth of experience and have produced a rich literature that can help to answer these questions.

Health Care Organizing.

In the view of HCFA and Community Catalyst, the largest and oldest state-based consumer health care organization in the country, and its national partner,  the fundamental problem underlying the health care system in the U.S. is the imbalance of power between diffuse and largely unorganized consumers and the organized interests of insurers, providers and payers.  The system works least well for the poor, people of color, chronically ill people and linguistic minorities, but issues of health system failure also cross the lines of race and class.   Empowering and institutionalizing the voice of consumers is the key to successfully improving both access and quality of care  For this reason, the Health Care For All mission is not only to fight for quality, affordable health care for all for all Massachusetts residents, but also to work to build a movement of empowered consumers that will have an ongoing role in shaping the health care system.  .  This view of the role of low-income or disenfranchised people as central to the political process of making fundamental change is shared in its broad outlines by most community organizers.

Although victimized by the current health care system, disenfranchised consumers and community members are not, in the view of community organizers, defined by that experience.  People are not “victims”, but have dignity and can draw on assets within themselves and their community to challenge power and make change.   This fundamental orientation has been shared by every major movement for social change, including the civil rights movement, welfare rights organizing, the women’s movement, the labor movement, the gay liberation movement, the mental health consumer movement, and the health care consumer movement.  In health care, the work over the last thirty years by women’s organizations is a helpful example.  Through consciousness raising groups, books like Our Bodies Ourselves, organizations and countless local projects, the movement successfully challenged the medical model of childbirth, helped make breast-feeding (an important preventive measure) the status quo again, attacked the overuse of mental health services “on” women, emphasized the importance of empowered patients in the physician-patient interaction, changed research priorities nationally, and made domestic violence a public health issue.  Similarly, it in the 1960’s, civil rights and anti-poverty organizers, in conjunction with progressive physicians and other providers, started the community health center program in urban and rural underserved communities, which promoted a new model of community based care with consumer leadership.    More recently, gay organizations, and in the last several years, organizations in communities of color, have had a major impact on AIDS treatment and organization of care, discrimination, drug policy, research, public health programs and the role of the consumer.

Health care consumer groups and community organizations working on health care justice are attempting to empower consumers and foster community engagement in order to ensure that the consumer voice is not drowned out by organized groups who are better positioned to compete for and win resources and power.  Health Care For All and Community Catalyst see health care as a dense interest group environment with multiple stakeholders and shifting alliances.  No single group is dominant and, in their view, alliances are required to pass any major initiative.  The existence of so many different interests also makes it possible for consumer groups to intervene and tip the balance of power in some important situations.   Changes in the organization and financing of care have made and will make new alliances between consumer advocates and other stakeholders possible.  Thus, health insurers and providers have been allies in expanding Medicaid programs in many instances, while physician groups have allied with consumers to pass managed care reform, which has been opposed by many health plans.   At the community level, community health centers or public hospitals and the community members that use them have formed alliances to preserve or expand safety net programs.

The Primary Care Futures Project is based on the premise that primary care is not currently the dominant paradigm or goal in the health care system, even among provider groups. As Tony Schlaff discusses in his introduction, and Rich, Pascpe, Breslin, Carler and McKinney discuss in their paper on primary care policy, after a brief period of interest in primary care as a cost saving mechanism in managed care organizations, public policy has again shifted again toward dominance of specialists and continued influence of technology and reliance on the market to allocate resources.  In order to be effective in addressing these powerful influences, primary care providers need allies both within the provider sector and among other stakeholders to effectively pursue their goals---consumers should be one of those allies.    

From a community organizers’ point of view, the key to being effective as a consumer organization in this health care environment is to make the most vulnerable consumers the major focus of health care organizing work.  Failure to do this will mean that those who are the most disenfranchised will continue to have their needs unmet.  And advocates alone do not have credibility with political leaders unless they can demonstrate that they actually represent an active constituency.  Health care reform can be seen as part of a larger movement for social justice, whose goal is not only change in economic and social institutions, but also the expansion of the political power of those who are most disenfranchised in the system. Therefore organizations such as Health Care For All have organized not only on health care access, but also on the broader health and social justice concerns of low income and minority communities; for example including immigrant access to health care and, most recently, the impact of environment problems in low-income housing on health.  (see case study of The Boston Health Access Project, by Standley, Herold and Hams, 1999, and Health Care For All annual report, 1999).   It is because of this social justice framework that there is demonstrable potential for health care groups to work closely with multi-issue groups that represent the constituencies adversely affected by the current economic, political and social institutions. And it is the reason that health care has become part of the agenda of these multi-issue organizations at the local, state and national levels.  Examples are the Industrial Areas Foundation, ACORN, and U.S. Action (formerly Citizen Action.) and their local affiliates.

Bibliography and Resources – Introductory Remarks

The literature on community organizing and health care organizing is extensive. An exhaustive list is beyond the scope of this paper, but the following resources provide some basic texts as well as links to organizations with further resources.

The first section includes books and articles on the rationale and tactics of community organizing not specifically tied to health care.  The emphasis in these manuals is on organizing within low income communities, although the Industrial Areas Foundation and related faith-based organizing now more explicitly proposes building alliances between low and middle income neighborhoods to address regional and systemic problems. In the second section, the resources address community coalition building and collaborations, an approach that more directly involves building ties between sectors in a particular community, including in some cases local political leaders.  In the third section, materials are included on the history of organizing among health care consumers as well as recent approaches by contemporary organizations.  Again, these selections are by no means complete, but are intended to help consumers find practical guides to expanding their work and to give providers an appreciation of the rationale behind the particular approaches and strengths which their potential community partners bring to their work.

The bibliography contains some internet references.  For a complete list of web-based references, click here

Bibliography and Resources

Community Organizing

1. Alinsky, Saul D. Rules for Radicals: A Practical Primer for Realistic Radicals, Vintage Press, October 1991.  Alinsky was founder of the Industrial Areas Foundation and began organizing workers, local merchants, unions and church groups in a Chicago neighborhood in the 1930s.
2. Delgado, Gary. Organizing the Movement: The Roots and Growth of ACORN, Philadelphia: Temple University Press, 1986.   A history of one of the successful networks of multi-issue local organizations, which grew out of the welfare rights organizing of the 1960’s and has local groups throughout the country today.
3. Staples, Lee, Roots to Power, New York: Praeger, 1984.  A classic description of an organizing model emphasizing direct participation by individuals in social change, with principles and examples about how to build organization.
4. Bobo, K., Kendall, J., Max, S., Organizing for Social Change, A Manual for Activists,  CA: Seven Locks Press, 1996.  A practical guide to community organizing and specific tactics for political action from leaders of the Midwest Academy, one of the most prestigious schools for organizers in the country. 
5. USAction (www.usaction.org) National multi-issue organization, formerly Citizen Action, with many local affiliates working on health care reform. Model includes door-to-door canvassing and statewide legislative campaigns.
6. ACORN (www.acorn.org). See Delgado above.  Website includes information on ACORN’s national training activities.  Links to local affiliated groups. 
7. Industrial Areas Foundation (www.tresser.com/IAF.htm). See Alinsky above.   Website has articles and links to local affiliates.
8. Histories of the major social justice movements (including the civil rights movement, the labor movement, women’s movement, welfare rights, gay liberation and others) as will as biographies of their leaders often provide detailed insights into their methods of consciousness raising, organizing, coalition building and political action.

Community Coalitions and Community Development

1. Kretzman, John and McKnight, John.  Building Communities From the Inside Out:  A path toward finding and mobilizing a community’s assets. Evanston, Ill: Northwestern University.  1993.   McKnight originated the term “asset mapping” and has written on coalition building and community development for many years.  This manual lays out the asset assessment process and how to involve local institutions in community building.  Order from Center for Urban Affairs and Policy Research, Northwestern University, 2040 Sheridan Rd., Evanston, IL 60208-4100.
2. National Assembly of National Voluntary Health and Social Welfare Organizations, The Community Collaboration Manual.  Washington, D.C.  1991.  A manual for groups that seek to build multi-sectoral coalitions in local communities.  To order, write The National Assembly, 1319 F Street, NW, Suite 601, Washington, D.C.
3. Kaye, Gillian., Wolff, Tom, From the Ground Up, A Workbook On Coalition Building and Community Development.  Amherst, MA: AHEC/Community Partners.  Spring, 1995.   Leaders in the Healthy Communities movement provide a practical guide to building community coalitions, addressing issues from empowerment to grassroots mobilizing to community assessment and evaluation.  Has an excellent annotated resource guide to coalition building materials. Order from AHEC/Community Partners, 24 South Prospect St., Amherst, MA 01002.

Health Care Consumers and Organizing

1. Boston At Risk 2000.  Six Principles for a New Health Care System: A Blue Print for Action, Families USA Foundation, Boston, MA, October 1994.  This report/training manual is the result of a discussion series with a multi-cultural group of community leaders.  The report discusses the principles of prevention, participation, coordination, cultural competence, access, and power that should form the basis for our health care system and includes examples of models that incorporate these principles.  Copies available from Community Catalyst, 30 Winter St., Boston, MA 02108.
2. Health Care For All, 1995-2000.  Annual Reports. Descriptions of projects, campaigns and consumer leaders of one of the most successful state-based consumer health care organizations in the country.  Copies available from Health Care For All, 30 Winter St., and Boston, MA. Also see website:  www.hcfa.org
3. Marone, James. The Democratic Wish, Popular Participation and the Limits of American Government, Basic Books, New York, 1990.   Discussion of health care consumer movement and planning in the 1970’s, in context of other movements for democratic rights, including labor and civil rights.
4. Starr, Paul, The Social Transformation of American Medicine, New York: Basic Books, 1982.  History of health care system in the U.S., including the history of attempts to expand health care social welfare programs and the role of organized medicine.
5. Eagan, Andrea Boroff, “The Women’s Health Movement and Its Lasting Impact”, An Unfinished Revolution, Women and Health Care in America, Friedman, Emily, editor, United Hospital Fund of New York, 1994. Pg. 17-29.
6. Meredith, Judy., Dunham, Cathy. Real Clout. Boston: The Access Project, 1999.  A practical training manual on how grassroots people and organizations can influence public policy through the political process.  Order from The Access Project, 30 Winter St., 9^th floor, Boston, MA 02018.
7. Community Catalyst, States of Health.  This is publication of Community Catalyst, a national organization that provides assistance to many state health care organizations.  Each paper provides accessible policy background on the topic combined with examples of action taken by state and local groups who have addressed the particular health care organizing and policy challenge.   Subjects include quality of care, organizing to preserve services when hospitals close or merge, free care, immigrant health, expanding Medicaid to the uninsured, managed care and many others.  To see a complete list and to order, see www.communitycat.org.  Website also contains links to many state-based consumer health organizations.
8. Seto, Natalie and Weiskopf, Bess K., Community Benefits, Need for Action, an Opportunity for Healthcare Change.  A Workbook for Grassroots Leaders and Community Organizations.  Boston: The Access Project, 1998.  A manual with specific suggestions for engaging consumers and community members to address health care restructuring in the local health care system.   Includes short case studies, scripts for community meetings and surveys, exercises.
9. Langill, Donna et al. Medicaid Managed Care: An Advocates’ Guide for Protecting Children, National Association of Children’s Advocates and National Health Law Program, 1996.  Advocacy and organizing guide, addressing specific problems in the health care system, such as enrollment, overcoming barriers to care, creating systems that facilitate access, and monitoring managed care.   Full of detailed case examples.
10. FamiliesUSA. (www.Familiesusa.org)  This national health care organization publishes numerous reports on national and state health care policy and coordinates some state-based campaigns.  Its website has links to many local and statewide leaders and projects in each state.
11. The Access Project (www.accessproject.org).  A national initiative supported by The Robert Wood Johnson Foundation and the Casey Foundation, which work in partnership with Brandeis University’s Heller School and the Collaborative for Community Health Development.  It has published a wide range of materials documenting the work of local and state organizations organizing for health care change, as well as manuals such as Real Clout and Using Date: A Guide for Community Health Activists.