U.S. Department of Health and Human Services

The Supply of Direct Support Professionals Serving Individuals with Intellectual Disabilities and Other Developmental Disabilities: Report to Congress

Executive Summary

U.S. Department of Health and Human Services
Office of the Assistant Secretary for Planning and Evaluation

January 2006

This report was prepared by the U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP), in collaboration with other federal agencies. For additional information about the study, you may visit the DALTCP home page at http://aspe.hhs.gov/_/office_specific/daltcp.cfm or contact the ASPE Project Officer, John Drabek, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, SW, Washington, DC 20201. His e-mail address is: John.Drabek@hhs.gov.

This report was prepared by staff from the Department of Health and Human Services' Office of the Assistant Secretary for Planning and Evaluation, in consultation with the Administration on Developmental Disabilities, the Office of Disability, the Center for Medicare and Medicaid Services; the Department of Labor's Employment and Training Administration; and the Department of Education's National Institute on Disability and Rehabilitation Research.

Amy Hewitt, Charlie Lakin, and Sheryl Larson of the Research and Training Center on Community Living, Institute on Community Integration of the University of Minnesota contributed extensively to this report.

PREFACE

In 2004, Congress requested that the Department of Health and Human Services (HHS) conduct a study on the shortage of direct support professionals (DSPs) supporting persons with intellectual disabilities and other developmental disabilities (ID/DD), including an examination of the root causes associated with high vacancy and turnover rates, and an examination of the impact this shortage may be having on services for people with ID/DD. This report is a product of collaboration between many offices within HHS in response to the request from Congress. Staff throughout the Department worked collaboratively to share information and data pertaining to DSPs. The results of these efforts are presented in this unified Report to Congress. In addition, HHS included information from the following activities:

• HHS phone conversations with state and local experts in long-term services and supports (LTSS) for individuals with ID/DD, and the DSP workforce that is central to their delivery.
• Data collection by federal and state agencies on the status and trends in LTSS, and in the recruitment and retention of the DSP workforce needed to meet current and future demands.
• A review of the research and evaluation relevant to the recruitment, training and retention of a DSP workforce sufficient to meet the current and future needs of individuals with ID/DD, their families and the public and private agencies engaged in providing needs services and supports to them.
• A synthesis of Departmental efforts related to developing services and supports for individuals with ID/DD in home and community-based settings provided by a DSP workforce of sufficient size and quality to deliver those services and supports as designed.

EXECUTIVE SUMMARY

One of the challenges facing the U.S. in the 21st century will be to ensure that individuals of all ages receive, throughout their lives, the health and social support services they need to live with dignity as fully included members of our society. For the estimated 4.3 million Americans of all ages with intellectual disabilities and/or developmental disabilities (ID/DD) living in residential settings, their own homes or with members of their families, ensuring access to and quality of direct support professionals (DSPs) is key to realizing national goals established in the Americans with Disabilities Act, the Developmental Disabilities Assistance and Bill of Rights Act, and other statements of national purpose with regard to the full citizenship and inclusion of individuals with ID/DD.

In June 2003 there were an estimated 874,000 full-time equivalent (FTE)* DSPs assisting individuals with ID/DD in group residential settings, family homes, their own homes, community jobs, vocational and day training settings, and other service settings. In all such settings DSPs help persons with ID/DD with basic health and self-care needs, but also play a central role in assisting them to gain skills, participate in community life, develop social relationships, make decisions and judgments, and become more independent. DSPs may also be referred to as direct care staff, aides, home health assistants, respite care providers, personal care attendants and by numerous other terms, but whatever their title, they share the distinction of being essential to the quality of life, health and safety of more than 1 million Americans with ID/DD who are in need of long-term services and supports (LTSS).

The Department of Health and Human Services (HHS) estimates that by 2020, the number of DSPs needed to meet LTSS demand will grow to approximately 1.2 million FTEs providing an estimated 1.4 million individuals with ID/DD with needed residential, vocational and other supports. Between 2003 and 2020 HHS anticipates that the number of DSPs needed to provide for the growth of LTSS for individuals with ID/DD will increase by about 323,000 jobs, or roughly 37%. This increase will be largely due to population increases, increases in life expectancy among persons with ID/DD, aging of family caregivers, and expansion of home and community-based services. This increase in demand will be occurring at a time when the labor supply of adults age 18-39 years, who traditionally have filled these jobs is expected to increase only by 7%.

These projections indicate that meeting the future demand for DSPs will be extremely difficult to achieve through enhanced recruitment alone. It will be critically important to improve also the retention of existing DSPs along with efforts to attract new ones. Since many industries will be competing for the supply of direct care workers, including the much more rapidly growing LTSS systems for aging persons with disabilities, compensation, working conditions, career opportunities and job design will play a key role in retaining current DSPs and in attracting new workers to assure the supply of DSPs needed to provide LTSS. Providing adequate levels of high quality, committed and stable direct support will require sustained effort by many actors. In such efforts it will be essential to work across federal, state and local governments, education and training institutions, workforce investment systems, faith-based organizations, service provider organizations and DSPs themselves in shaping DSP roles into ones that offer those who enter them with sufficient opportunity and respect to consider it as a viable career decision.

SECTION NOTE