Consumer/Participant Direction

This brochure was created using feedback from consumer focus groups, peer trainers, and other stakeholders. The brochure provides safety & prevention strategies, planning for backup care, preparing for attendant support during a community-wide disaster, how to minimize risk of theft, and health care emergency instructions and form. The strategies address emergency backup and incident management for consumers directing their own care or who have an authorized representative directing their care.

As the number of those needing care at home continues to grow, it is becoming more difficult to find workers. One solution is to rely on consumer-directed services, in which clients hire friends and family as paid caregivers (whom we call “related caregivers”). This study explored the experiences of related caregivers, most of which had not considered direct-care work if a loved one had not needed them and sought to understand who might represent potential home care workers in the future.

The Arkansas IndependentChoices program developed two new tools. The Consumer-Directed training manual will provide users with ideas and suggestions on hiring, training, and managing a personal care attendant. The Personal Care Attendant handbook will provide users with training material that will help trainees do their job as a personal care attendant. Both manuals contain information about hiring, communication and management issues.

This publication summarizes and synthesizes some of the most important things that research and demonstration programs have learned about consumer direction. The paper provides leaders and practitioners with a common framework of understanding for our next challenge: To build upon current knowledge and to make “consumer direction” an integral part of the options available for all older persons who may need long-term care. Read the 12 common consumer direction myths and then learn the reality.

The Missouri Independence Plus Grantees have developed a number of tools during the implementation of their consumer-directed program aimed at helping people with disabilities. Review the 7 participant workbooks titles include Designing Supports, Financial Management, Individual Budget, Orientation & Overview, Person Centered Planning, Support Broker, Self-Determination. Visit their website and view the program brochure for additional information.

The Shawnee County CDDO is pleased to present the Kansas Personal Assistance Supports and Services (K-PASS) Self-Direction Toolkit. The purpose is to provide people with disabilities the information and tools they need to hire and manage their personal assistant supports and services. The toolkit includes such items as job descriptions, training information, emergency back-up plans and other useful resources.

The manual is a nursing home to community discharge planning manual designed primarily for use in nursing homes and may be of help to others to use in developing manuals for their communities. It is designed to orient the long-term care providers to the nursing home discharge process by defining the roles of the key partners who are involved in returning residents to community living and to document a standard protocol for accessing and maximizing partner resources.

This report describes the implementation of Personal Preference by synthesizing information from in-person discussions with program staff, a mail survey of program consultants, telephone interviews with consumers in the treatment group, and program records. It discusses the program’s goals and features, the ways consumers managed their program responsibilities and took advantage of increased flexibility, and the degree to which consumers were satisfied with the programs.

In the past decade consumer-directed (CD) services have proliferated in public programs. AARP has developed a two page Fact Sheet that offers an short overview of consumer preferences, program characteristics, the role of fiscal agents, and the ways consumer direction is expanding.

This groundbreaking 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 II provides four background papers and two personal accounts. Chronic illness and disability, as these accounts reveal, affects not only the lives of the individual, but also of family members who provide the care and support.