Adequacy and Availability of Personal Assistance Services

Background: About 10 million adults in the United States need assistance to carry out basic daily activities such as bathing, eating, cleaning, or grocery shopping. Most of them live at home. Others live in nursing homes and other institutional settings, but could live at home or in the community if appropriate, affordable support were available.

Family members and friends provide most of the needed assistance for people in home- and community-based settings, but home care workers, personal assistants, direct support professionals and other direct-care workers are a critical resource for many. Such workers are already in short supply in many regions and demand is expected to grow rapidly, due to a combination of consumer demand and changes in public policy. A significant factor in that growth is the federal government's New Freedom initiative of 2001, which called on states to integrate people with disabilities more fully into the community.

The project: As part of its effort to help states comply with the New Freedom Initiative's directives, the Centers for Medicare and Medicaid Services is funding PHI to evaluate the availability and adequacy of direct-care workers in home- and community-based settings and develop resources to strengthen the workforce. The project has identified practical, field-tested ideas to help both employers and state and local policymakers support the direct-care workforce and is currently developing training resources for agencies and individuals who are participating in consumer-directed care programs.

The Publications: The materials developed under the project are geared toward anyone who oversees funding or monitors service delivery for home- and community-based services or who hires, trains, and/or supervises direct-care workers. All are available free of charge through PHI's National Clearinghouse on the Direct Care Workforce (call 718-402-4138 or 866-402-4138 or e-mail info@directcareclearinghouse.org). They include:

• Return-on-Investment Calculator: The web-based Return on Investment calculator allows states (and the District of Columbia) to analyze the economic and social impact of additional investment in the wages of direct-care staff working in their personal care services programs. Designed to incorporate a wide range of factors -- from the size of a proposed wage increase, to staff turnover costs and retention rates, to issues related to implementation design – the on-line calculator provides state policymakers with an easy-to-use tool for identifying the real costs and benefits of a wage increase.

• The Practice Profile Database, an online collection of brief descriptions of programs implemented by service providers, educators, and worker and community organizations to improve the recruitment, training, and retention of direct-care workers. Profiles include facility-based as well as home- and community-based long-term care.

• A review of the literature on the home- and community-based direct-care workforce. This summarizes current knowledge and theories about recipients and providers of services, trends in payment and delivery systems, the growing demand for personal assistance services, and the five primary areas that must be addressed in order to strengthen the direct-care workforce.

• A resource list that summarizes other sources of information on the topic, such as websites and conference proceedings.

• The Right People for the Job, a publication for agencies and individual consumers offering straightforward information on how to recruit, assess, and select direct-care workers for home- and community-based care.

• The Right Start, a publication for agencies and individual consumers on training direct-care workers.

• Direct Care Worker Associations: Empowering Workers to Improve the Quality of Home- and Community-Based Care, a publication for policymakers, advocates, and direct-care workers that provides an overview of the goals and activities of professional associations for direct-care workers and some tips for organizing this type of association.

• Employing, Supporting and Retaining, Your Personal Assistant: An Orientation Workshop for People With Disabilities, a supervisory training curriculum for consumers directing their own care, designed to strengthen the consumer's ability to hire, train, and supervise his or her personal assistance workers.

• Supervision As a Tool for Building Relationships: A Curriculum for Home Care Agencies That Support Consumers With Disabilties, a one-day training curriculum introducing home care agency supervisors to the consumer-directed model, and their role as mediators between the consumer and the personal assistance worker.