Consumer/Participant Direction

The Community Living Exchange Collaborative At ILRU has prepared this summary notes from the National Summit on Self-Determination and Cognitive Disabilities held on April 26-28, 2004. The notes provide an overview of how to: plan for risk, manage risk, optimizing independent functioning, organizing community, natural and peer supports. Each subject is broken into the tools needed, changes needed, solutions, and training needed.

This report summarizes information from the WI Department of Health and Family Services, Bureau of Aging and Long Term Care Resources (DHFS-BALTCR) Nursing Home Transition Real Choice Systems Change grant. A survey colleting information is an important initial step to assist county and state-level program and policy planners. This report provides an overview of the ways in which counties purchase direct care and support services for elderly people and people with disabilities.

Recent health policy shifts and practice changes have explored consumer-directed health care. The National Council on Disability decided to research & evaluate the evidence base in order to offer a clear picture of the initiatives strengths and weaknesses. This study includes a systematic review of the literature (both print & Web-based) on consumer-directed and -oriented care. The study also addresses questions and researches the variety of models, preferences, outcomes and cost-effectiveness.

This material was part of an educational series addressing long-term care choices in Broome County, New York. The series of booklets includes the following titles: Paying for Long-Term Care; Facility and Community Options; Help at Home; What you Should Know About Staying at Home; When You Are the One Providing Care; Advance Health Care Planning; Adults with Disabilities; and Healthy Choices for Living Well.

The Real Choice Systems Change grant was awarded in 2002 to the Connecticut Department of Social Services. The project has two primary goals: 1) To build the capacity within the state of Connecticut to support informed decision making, independent living, and a meaningful quality of life for persons with disabilities across the life span. 2) To assist three communities in Connecticut to become models of support for opportunities and choices for persons with disabilities across the lifespan.

The ARC of Tennessee developed this Personal Assistance Supports and Services Guide to provide people with disabilities the information & tools needed to hire and manage a Personal Assistant. Consumers first complete the self-assessment tool to determining needs. This entry also includes the user's guide and evaluation feedback form.

As represented in the U.S. Supreme Court’s 1999 Olmstead decision, our nation’s values and laws have moved to a point where states should be developing community supports and services with people, not for them. Yet many professionals were trained and agency protocols were set in motion in an earlier time period, when the current view was far from predominant. This research looks at how a sample of agencies within the State of Connecticut promotes self-determination.

In October 2003, the Connecticut Department of Social Services, in collaboration with the Real Choice Steering Committee, which includes Consumers, State agencies and the University of Connecticut A.J. Pappanikou Center for Excellence in Developmental Disabilities Education, Research and Service, received a three-year grant from the Centers for Medicare and Medicaid Services to implement CHOICE (Connecticut Has Opportunities for Independence, Choice and Empowerment).

The New Hampshire CPASS project identified system “gaps” that impact a consumer-directed long-term care (LTC) service model. Focus groups identified gaps in the personal care services system, services that are at the heart and origin of consumer direction in the State. This analysis begins with an overview of consumer-directed personal care (CDPC), followed by a discussion of the gaps identified by focus groups and initial recommendations to address the gaps.

Explores states’ use of “global budgeting” to promote a public policy of supporting consumers’ long-term care choices. Prepared for NJ policymakers, this report defines global budgeting in the context of long-term care, provides five state models, and offers lessons learned about determining what is “in the globe,” legislative and administrative language to advance it, and how it can be implemented. Funded by the NJ Department of Health and Senior Services.