Consumer/Participant Direction

This two-part report calls for significant improvement in health care and long-term care that relies too much on families without recognizing and assessing family caregivers' own support and health needs. Volume I reflects the professional consensus achieved among experts and stakeholders on fundamental principles and practice guidelines that apply to a range of practitioners in a variety of settings. The strategies focus on stimulating caregiver assessment as a basic component of practice.

This manual is intended to address two identified training needs for consultants/support brokers working with participants in self-directed care. MODULE ONE: Facilitating the Paradigm Shift for Consultants and MODULE TWO: The Dynamics of Choice and Decision-Making for Participants. The program identifies training needs by addressing the philosophical framework necessary for successful implementation of a participant-directed service and was designed to be delivered in two half-day sessions.

Managed by the Home Care Quality Authority (HCQA), a public agency in Washington, this Registry is a customized internet-based system designed to match the needs of publicly funded in-home consumers/employers with pre-qualified individual providers. The day-to-day operations are administered by Referral and Workforce Resource Centers (RWRCs). Local sites offer programs and services including referral searches, a Resource Clearinghouse and outreach materials such as the attached newsletter.

This paper discusses the activities of 11 grantees and the program and policy issues they have encountered. The paper’s primary purpose is to provide information that states and stakeholders will find useful when planning or implementing consumer-directed initiatives, whether through solely state-funded programs or the Medicaid program. In particular, the report highlights program and state and federal policy challenges and how Grantees are addressing them.

Some states incorporate caregiver support services into their programs that serve older people or adults with disabilities; in other states, it is separate with distinct eligibility criteria. Because many states are increasing HCBS funding, policymakers and administrators have a strong interest in emerging trends. This report highlights three: caregiver assessment, consumer direction in family caregiver support services, and collaborations between the aging network and the health care system.

Support brokerage is a potentially important development that can assist in enabling people to make informed decisions and promoting independence. This discussion paper from England raises a number of pertinent debate questions about the practicalities and potential difficulties of support brokerage. As we here in the US implement system transformation that includes self-determination, we can learn from the examples illustrated in these UK brokerage pilots.

The CMS Systems Change conference, Transforming Systems: Keys to Success was held April 10-12 in Baltimore. Presentations from the 2006 sessions are available in both PDF and text formats. Topics range from ideas on system transformation, stakeholder involvement, coalition building, strategic planning, sustaining systems change, and the Deficit Reduction Act. Full titles are listed in the keywords section.

Granite State Independent Living (GSIL), working collaboratively with the Department of Health and Human Services (DHHS), solicited proposals from organizations interested in becoming consumer-directed personal care services providers (PSCP). Although this RFP is a few years old, it serves as an example of how to seek out providers. Moreover CHAPTER He-P 600 sets forth the procedures and requirements for operating as an other qualified agency.

The third paper in the series examines what contemporary social service systems can do to promote consumer-directed services. We identify different features that make a service \"self-directed,\" and we identify characteristics of successful consumer direction and self-determination. In its present form, this paper serves as foundation work for additional dialogue and will also undergo continuing development in discussions with representatives of projects and consumer leaders in states.

The second in the series, this paper identifies the features of high-quality integrated community services and the systems that support them and serves as the foundation work for additional exploration. The paper will undergo continuing development in discussions with representatives of projects and consumer leaders, will augment assessment of existing systems and planning of new or improved systems, and ideally become an even more useful tool for those involved in systems transformation.