Welcome!

Consumer Digest: Making a Difference has been developed to help community members to become involved in local decision making that will determine what HIV services are available in their community While this consumer digest may be helpful to many types of community members, its primary purpose is to support persons living with HIV disease to be effective participants on Ryan White planning bodies.  Whether you already are involved in your planning body process or wish to learn more before making the commitment to get involved, the Consumer Digest can help you.

The CARE Act (Comprehensive AIDS Resources Emergency) is the Federal law that provides money to cities, States, community-based organizations and other types of organizations to provide HIV services.  The CARE Act specifically requires that local HIV services planning bodies include persons living with HIV infection.  These local planning councils and Statewide consortia (collectively referred to as Ryan White planning bodies throughout this document) have a big impact on determining the types of HIV services — and which specific programs — are available in a community.

In recent years, Congress has appropriated (or designated) funding in the range of $2 billion per year to support HIV health services through the CARE Act.  Much of this money is distributed to States and local governments that rely on planning bodies to help them identify who is affected by the HIV epidemic, set priorities for the types of HIV services that are needed, and determine how best to allocate funding among multiple priorities.  Persons living with HIV disease (PLWH) are critical to the success of these planning processes because they bring a perspective that is different from other members and know firsthand what services are needed.  They also can help make sure that different groups of PLWH are included in the process and that their service needs are not overlooked.

The Health Resources and Services Administration’s (HRSA) HIV/AIDS Bureau (HAB) is the Federal agency responsible for administering the CARE Act.  HAB produced this Consumer Digest with the assistance of PLWH members of planning bodies and PLWH trainers at national HIV/AIDS organizations.  This document provides new information regarding the CARE Act Amendments of 2000 related to PLWH involvement, and draws upon other publications and materials useful to PLWH on (or considering serving on) a planning body. 

This digest is intended to provide you with information and tools to help you Make a Difference by serving your community as an active and informed member of a Ryan White planning body.

Consumer Digest: Making a Difference is organized to help you find the information you need.  There are four chapters, marked by tabs to the right of each chapter's first page.  A brief self-test before each chapter will help you assess how useful the chapter might be for you.

Making the Commitment.  This chapter provides information about the CARE Act. It tells a little about the law, and describes what planning bodies generally do and why it is important to have PLWH on planning bodies.  This chapter also describes how the CARE Act directs money to your community to provide HIV health care services. It will help you begin to assess whether you are ready, willing, and able to make the commitment to become involved in your local planning council or consortia.

What You Can Expect. This chapter has more details about how planning bodies operate, including who the key players are, what the major tasks are, and how decisions are made.  It describes how local HIV services planning bodies relate to and coordinate with local HIV prevention planning groups.  Once you make the commitment to join a planning body, your community will expect things from you.  In turn, you have the right to expect things as well.  It describes ways to represent the views of more than just yourself—and to ensure that the views of PLWH are heard.  This chapter describes what you can expect from your planning body.

Doing it Right.  This chapter is designed for more experienced planning body members who are already familiar with the basics of CARE Act planning.  It provides some practical tips for doing a good job, based on the experiences of PLWH who have been involved.  This chapter includes models of how PLWH have made a difference in HIV services planning around the nation.  It contains background information on how the U.S. healthcare system works and information on some critical issues of importance to planning bodies, including housing, substance abuse and healthcare issues for racial and ethnic minorities.

Getting Better All the Time.  One benefit of being involved is that you will learn about HIV services and gain new skills.  The longer you are involved, the more you can learn.  Many of the skills that you will gain by participating on a Ryan White planning body could help you at work or in other parts of your life.  To make the most of your experience, this chapter provides resources that you can use to help you become more knowledgeable and more effective.

Glossary of Terms. Included to help you understand the acronyms, terms and organizations that are used in this manual and in Ryan White planning at the local level.

We hope that this consumer digest is useful to you.  Your community is depending on people like you.    Thanks for your commitment!