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Context and Issues in Research on Expenditures and Outcomes of Community Supports
Many factors influence the availability and quality of services and supports for people with intellectual disabilities and developmental disabilities (ID/DD). Economic issues should not be the primary basis for service planning and policy, but as Ashbaugh has observed, "Look behind any movement that secures a place for itself in the perennially underfunded world of developmental disabilities and you will find an economic engine" (2002, p. 417). Service provision does have an important economic dimension, and it is essential to understand as much as possible the associations among service approaches, individual needs, costs, and outcomes so that effective, equitable, and economically sustainable service systems can be developed.
In the United States, federal, state, and local governments spent almost $35 billion in fiscal year (FY) 2002 on noneducational services for people with ID/DD (Rizzolo, Hemp, Braddock, & Pomeranz-Essley, 2004; see also Chapter 2). Almost 80% of this amount was used to fund community services. In FY 2002, federal and state Medicaid Intermediate Care Facilities for Persons with Mental Retardation (ICFs/MR) and Home and Community-Based Services (HCBS) Waiver programs exceeded $24 billion in total long-term care expenditures (Prouty, Smith, & Lakin, 2003). Expenditures for home, community, and institutional services are enormous in size and highly varying 1) in the nature and quality of services they purchase (e.g., from a "bed" in an institution of several hundred residents, to companion support in a person's own home); 2) in the amounts spent for similar "models" of service in different states, communities, and/or agencies; and 3) in the methods of disbursement of expenditures (e.g., from government retrospective reimbursement of provider costs, to direct cash payments to families and/or individuals for purchasing their own services). Despite these numerous variations, there is only a limited and scattered literature on the nature and outcomes of expenditures for services for people with intellectual and developmental disabilities.
This book draws together information on costs, outcomes, and approaches to financing services for people with ID/DD and the effects on efficiency and/or effectiveness of variations in such factors. The primary focus is on community services, but because institutions continue to operate, attention is also given to the costs and outcomes of deinstitutionalization. The term costs encompasses both expenditures for services and the mechanisms for allocating resources that affect the nature and operation of service systems, specific service types, and ultimately the lives of service recipients. Costs sometimes is used to include not only public expenditures but also the substantial personal costs in time and money of family members, volunteers, and others applied to the support of people with ID/DD. Acknowledging such costs leads to distinctions among costs, personal expenditures, and public expenditures. Because accounting is rarely available on the comprehensive definition of cost in this book, the terms cost and expenditure are treated as synonymous unless distinguished as different.
There are many important issues that arise when considering community services and the expenditures for them. Foremost among these is effectiveness in achieving high-quality outcomes and good quality of life. Without satisfactory outcomes, expenditures on services are a poor investment for society, resulting in deprivation, increased disability, and even danger for service recipients and their families. Therefore, this book focuses on both costs andoutcomes.
Services' cost and cost effectiveness are important concerns for service recipients and families as well as for policy makers and service admin