Advocacy Tools: Guides
Eligibility and Enrollment Systems: An Advocate’s IT Toolkit provides background information and key questions to ask about the use of information technology (IT) for enrollment in Medicaid and coverage through exchanges. It also includes strategies that advocates can use to ensure that IT systems are well-designed for consumers and promote the objectives of streamlined, simplified access to health coverage. (Georgetown University Center for Children and Families, November 2012)
The Narrative Communications Project: Takeaway Findings on a Message-Framing Approach emphasizes the importance of effective communications and messaging by highlighting the successes of state advocates who received grants to help with their messaging strategies. These advocates said that effective messaging helped shift media coverage from focusing on weaknesses in children’s insurance programs to emphasizing how well the programs work. (Mathematica Policy Research, November 2012)
Exchange Implementation: To Partner or Not to Partner? lists questions to consider in determining whether a partnership exchange would be in the best interest of consumers and small businesses in states that are unlikely to establish state-based exchanges. (Families USA, October 2012)
State Responsibilities in a Partnership Exchange explains the options for states that choose to implement a partnership exchange, and it describes the functions that partner states will need to perform. (Families USA, October 2012)
Coordinating Human Services Programs with Health Reform Implementation: A Toolkit for State Agencies explains the importance of program integration and provides tools and suggestions related to eligibility, applications, verifications, and renewals. (Center on Budget and Policy Priorities, May 2012)
How the Affordable Care Act Makes the Section 1115 Waiver Process More Transparent: An Advocate's Guide explains the new rules that will give advocates and consumers a bigger voice in the waiver process. It describes when advocates can comment on waivers, and it offers tips on how to take advantage of all the opportunities the new rules provide. (Families USA, April 2012)
Implementing the Patient Protection and Affordable Care Act: A 2012 State To-Do List for Exchanges, Private Coverage, and Medicaid gives state advocates an in-depth blueprint for action in 2012, outlining issues to start thinking about and tasks that deserve immediate attention. (Families USA, February 2012)
How Can We Establish an Essential Health Benefits Package that Meets Consumers’ Needs? provides background information and talking points on the critical issues that need to be addressed to ensure that consumers in the exchanges, individual and small group markets, and Medicaid benchmark plans have access to comprehensive coverage. (Families USA, November 2011)
Sharing across the States: Strategies for Story Banking gives best practices advice from state advocates across the country on how to build a story banking infrastructure in their organization, find consumers to share their stories, organize and publicize stories, and more. (Families USA, September 2011)
The Basic Health Option: Will It Work for Low-Income Consumers? provides a framework for advocates to think about whether this option, created by the health care law, will work for their state. It covers program basics, discusses the problems it might address, and raises key issues that can affect the direction such a program might take. (Families USA, July 2011)
Sharing across the States: Strategies for Engaging Young Adults is designed to help state advocates tackle this demographic and reflects the best thinking of the experienced organizers we interviewed. It discusses how to frame your issue, organizing on and off campus, and using traditional and social media. (Families USA, July 2011)
Stop the Slashing: The Human Needs Advocates’ Simple Guide to Understanding—and Defeating—Unprecedented Attacks on the Federal Budget is a webinar that aims to educate advocates so that they can respond to attacks on essential programs and services, such as Medicaid and Medicare. It explains the federal budget proposals, including the Ryan budget and several budget amendments that have been proposed in the Senate, and shows the impact those proposals will have on the programs that would be cut and on the people who depend on them. (Coalition on Human Needs, June 2011)
Implementing Exchanges: A series of guides on implementing state health insurance exchanges.
State Demonstrations to Integrate Medicare and Medicaid explains the requirements for demonstrations, discusses possible models of integration, and provides guidance to advocates on how to get involved in the planning process. (April 2011)
Preventing Unwarranted Exceptions to the Affordable Care Act's Medical Loss Ratio (MLR) Requirements explains the opportunities for advocacy if state insurance regulators file for adjustments to the MLR requirements. It also provides a list of questions to ask regulators if your state seeks an adjustment; these questions can be adapted for your state. (January 2011)
Building an Effective State Exchange offers 15 benchmarks to guide advocates and legislators as they develop the new health care exchanges that are required by the Affordable Care Act. Advocates are free to take this document and adapt it to the needs of their states. (December 2010)
Sharing Across the States: Strategies for Public Education is a guide for state advocates about how to educate the public about the new health care law. This guide discusses community forums and Train-the-Trainer programs and gives examples of how state groups across the country have used these public education models to get information to their communities. (September 2010)
Designing a Consumer Health Assistance Program discusses these programs and how health reform will dramatically expand the assistance they provide. It reviews key considerations to keep in mind when designing such programs, including grants and other funding, function, scope, location, staffing, training, and outreach.(August 2010)
Screening for Medicaid and State Children's Health Insurance Program (SCHIP) Eligibility is intended as a reference to help determine whether someone may qualify for Medicaid or SCHIP coverage. Each question includes federal and state-specific information. (Families USA, originally published in 2004, updated June 2008)
Confronting Disparities while Reforming Health Care: A Look at Massachusetts examines how state advocates were able to build on expansion efforts and address the host of issues that affect disparities in health and health care. Includes an extensive discussion of lessons that can be learned from the Massachusetts experience. (Families USA, June 2007)
Best Practices: How States Can Reduce the Burden of the Citizenship Documentation Requirement reports on the results of a nationwide survey regarding how states are implementing the DRA. (Families USA, May 2007)
Navigating the Medicare Part D Prescription Drug Coverage Program: A Guide for People with Disabilities, Benefits Counselors, Disability Organizations and Others on Ensuring Adequate and Appropriate Access to Prescription Drugs is designed to help people with disabilities maximize their Medicare Part D drug coverage. (United Cerebral Palsy, June 2006)
Smart Links allows students, faculty, and researchers to easily investigate health policy issues by providing one-click access to “pre-queried” searches from multiple search engines on a range of health policy topics. The results appear in a one-page, easy-to-read format and cover peer-reviewed research, policy analysis, government documents, and news reports. (KaiserEDU.org, May 2006)
Talking about Medicare: Your Guide to Understanding the Program is designed to help beneficiaries and their families think through basic health care issues. It also provides information on how the Part D drug program works, how to choose a drug plan that meets beneficiary needs, and how low-income enrollees can get additional help with drug costs. (Kaiser Family Foundation, April 2006)
Working with the Faith Community: Reflections from a National Faith Leader This tool for advocates identifies several tips and practical strategies for engaging and working with the faith community around health care issues. Drawing from her work with congregations that represent communities of color, Barbara Baylor, Minister for Health and Wellness at the national office for the United Church of Christ, reflects on how to engage the faith community as an effective way to improve health care.(March 2006)
This resource center on Low-Income Working Families provides a foundation for better understanding the dynamics of the working families who often lead a precarious existence. It provides basis statistics, as well as research on employment, income and expenses, and immigrant families. Forthcoming research will address unemployment, unemployment insurance, child care, and housing assistance. (The Urban Institute, January 2006)
Navigating Medicare and Medicaid, 2005: A Resource Guide for People with Disabilities, Their Families, and Their Advocates
This guide explains the critical role Medicaid and Medicare play in the lives of people with disabilities - a primer for people who are completely unfamiliar with Medicare and/or Medicaid. (The Kaiser Family Foundation, February 2005)
Keeping Medicare and Medicaid When You Work, 2005: A Resource Guide for People with Disabilities, Their Families, and Their Advocates
The program rules for Medicare and Medicaid with regard to work are complex. Recently, Congress has enacted additional legislation to remove more of the disincentives to working and to continuing to receive health care coverage through these two programs. This guide explains many of the complex issues and policies that can be used to help people with disabilities keep their health coverage and seek employment. (The Kaiser Family Foundation, February 2005)
From Concept to Operation: A Guide to Developing Assistance Programs for Health Care Consumers
Based on the Health Rights Hotline of Sacramento, California, this guide provides a framework and specific steps that organizations may take to set up a consumer assistance program. Topics covered include program design, staffing and training, outreach, collecting and analyzing data, program evaluation, and financing. (January 2003
Designing a Consumer Health Assistance Program
As health care becomes more complex, many states and localities are developing consumer health assistance programs to meet the needs of consumers within their jurisdictions. This guide reviews some key considerations to keep in mind when designing such programs. 24 pp. $15.00. (June 2001)
A Guide to Monitoring Medicaid Managed Care
This guide will help community organizations determine how well managed care plans are serving Medicaid beneficiaries. Provides the how-tos of monitoring projects, from simple "do-it-yourself" efforts to the gathering and analysis of data from many sources. 84 pp. $20.00. (September 2000)
Monitoring Medicare HMOs: A Guide to Collecting and Interpreting Available Data
Aimed at groups working with Medicare beneficiaries, this 86-page guide provides step-by-step instructions for gathering and making sense of Medicare HMO data from federal agencies, state governments, and other sources. Parts of the guide will be useful to those interested in Medicaid and/or commercial HMOs. 86 pp. $15.00. (May 1998)
A Guide to Access to Providers in Medicaid Managed Care
This 62-page guide examines how managed care has affected Medicaid beneficiaries' access to primary care physicians and specialists, including "traditional Medicaid providers." Explores problems in access to care, explains access requirements in federal law, and gives suggestions for steps advocates can take to help assure provider availability. Features tables of provider access requirements in state Medicaid managed care contracts. $20.00. (April 1998)
A Guide to Meeting the Needs of People with Chronic and Disabling Conditions in Medicaid Managed Care
This 44-page guide, written by National Health Law Program and Families USA, examines issues confronting states as they move toward mandating managed care for people with chronic and disabling conditions. The guide discusses problems experienced when either populations or services are "carved out," looks at steps states have taken to ensure quality care, and provides advocates with information about where to make their voices heard. $20.00. Fact sheet also available. Free (January 1998)
A Guide to Complaints, Grievances, and Hearings Under Medicaid Managed Care
This 43-page guide, written by National Health Law Program and Families USA, provides an overview of Medicaid managed care enrollees' legal rights, common problems that prevent beneficiaries from receiving an impartial review, examples of what states have done to protect the rights of beneficiaries, and suggestions for ways advocates can help ensure an adequate complaint process is in place. $20.00. Fact sheet also available. Free. (January 1998)
A Guide to Cost-Sharing and Low-Income People
This 40-page guide addresses the imposition of cost-sharing (co-payments, deductibles, premiums) in both the Medicaid program and the new State Children's Health Insurance Program. Current legal requirements are presented and research on the effects of cost-sharing is summarized. $20.00. Fact sheet also available. Free. (October 1997)
A Preliminary Guide to Expansion of Children's Health Coverage
This 52-page guide provides a summary of the new children's health initiative enacted as part of the Balanced Budget Act of 1997 and discusses key decisions facing the states as they implement the new program. Lays out the pros and cons of Medicaid and of the State Children's Health Insurance Program (SCHIP). Includes an index to the new law and a chart of state funding allocations. $15.00. (September 1997)
A Guide to Marketing and Enrollment In Medicaid Managed Care
This guide reviews common problems experienced when states move their Medicaid populations into managed care and discusses solutions to those problems. Includes a chart comparing provisions of various state RFPs used to solicit enrollment brokers. 34 pp. $20.00. Fact sheet also available. Free. (June 1997)
Making Radio Work for You: An Advocates Guide on How to Use Radio Actualities and Talk Radio to Move Your Agenda Forward
This report gives step-by-step instructions for developing and placing pre-recorded radio news stories. It also teaches advocates how to use talk radio to convey our message. 31 pp. $5.00 (October 1996)
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