Facilitating Consumer Partnerships in State Policy and Program Design

Individuals with disabilities have first-hand knowledge of the supports they need to live meaningful lives in their communities and the barriers to obtaining them. At the same time, those who design, fund, and administer home- and community-based services (HCBS) understand the statutory and regulatory requirements and budget realities which govern them. As states move towards real systems transformation, it is imperative that these two groups work together in leveraging their experience and expertise. Currently, state service-delivery systems face considerable challenges in conceptualizing and creating sustainable programs that maximize the independence, real choices, rights, and integration of people with disabilities. Collaborative partnerships between consumers, policymakers, and program administrators are an essential part of the strategy for addressing these challenges.

Partnerships involve more than just substituting old vocabulary (safety, security, supervision) for new (self-determination, choice, community participation) or increasing the number of people with disabilities who serve on various advisory committees or workgroups. Authentic partnerships can fundamentally change the roles and relationships of service systems and service users in the process of system transformation. Authentic partnerships involve consumers at each point of the system continuum, including program design, implementation, and evaluation. In a true partnership, consumers are respected as leaders as well as service recipients.

The purpose of this guide is to provide state agencies with an array of practical guidelines, recommendations, and techniques to create and sustain partnerships with individuals with disabilities. To work together, each partner must learn how to communicate with, respect, and trust the other. The ultimate goal of such partnerships is an efficient, responsive service system that promotes the independence, freedom, rights, and integration of individuals with disabilities.

The guide is presented in six Parts:

• Part One: Preparing State Agencies to Become True Partners with Consumers
• Part Two: Laying the Groundwork for Effective Partnerships
• Part Three: Using Facilitators to Enhance Collaboration
• Part Four: Conducting Effective Partnership Meetings
• Part Five: Strengthening and Expanding the Partnership
• Part Six: Evaluating Effectiveness of the Consumer Partnership

Although the guide focuses on practical strategies that can be used to enhance and support partnerships with consumers, strategies are not the key point of the paper. The strategies are the “nuts and bolts,” but the overarching principle is to share real power with consumers. If an agency does not share power, then all of the accessible meetings with consumers are essentially window-dressing to business as usual. Power sharing is complex and challenging. However, it is a fundamental precept of systemic change and this guide.