It seems like only yesterday that members of the Consortium for Citizens with Disabilities (CCD) marched on Washington to demand a health care system that was accessible, comprehensive, and fair. The threat during the 1990s was that a fragmented system would leave people with disabilities in a pool of high-risk health consumers who would be targeted by budget cuts, resulting in a lack of services. In short, the message called for inclusion in the mainstream. For example, in reviewing aspects of health care systems for people with developmental disabilities in 1997, Pulcini and Howard reflected the mood at the time:

Barriers to access include lack of continuity among fragmented and complex services and the inability of the present system to adapt services to varying ethnic, class, age, gender, and disability requirements. Access to health care for persons with MR/DD deals with the degree to which services are comparable and available for this population as compared to the general population … Are the health services segregated from or integrated with those provided to the general population? (pp. 210–211)

Advocacy strategy at the time was predicated on the belief that risk should be distributed across the entire population rather than be borne by the individual. Because risk estimation becomes more accurate as the size of the population pool increases, a large risk pool, perhaps with risk adjustments for subsets of individuals with disabilities and chronic illnesses, was seen as serving this population well (cf. Kastner, Walsh, & Criscione, 1997). There was a general abhorrence for schemes mandating vouchers, medical savings accounts, and other insurance mechanisms that placed financial risk squarely on the shoulders of individual persons, particularly those with disabilities. It is striking how things have changed.

In the last 15 years, the pendulum has swung away from universal coverage with comprehensive benefits and toward individual control through consumer-directed supports and personal budgets (e.g., Parish, Pomeranz-Essley, & Braddock, 2003). Today's principles focus on autonomy and self-determination. The gold rush for institutional riches appears to have blinded even the most temperate advocates, who now want their share of dollars as facilities downsize in response to Olmstead (Olmstead v L.C., 1999) pressures. Our willingness to now place individuals at risk with personal budgets (dare we say Olmstead vouchers?) has replaced the principled stand we took at the end of the last century on a health care system for everyone. Who knows, perhaps we should reconsider special education vouchers and medical savings accounts, given our philosophical enlightenment?

We are concerned with the popular belief that a windfall from institutional closures will occur. When all costs are considered, and adjusted for risk, there is little difference in costs between institutional and community care (Walsh, Kastner, & Green, 2003), a fact that has long been known but little publicized. When cost differences are found, they are generally due to lower staffing costs in community settings (e.g., employees of private agencies with lower salaries and fewer employment benefits vs. unionized state employees with higher salaries and more comprehensive employment benefits). In addition, when facilities are closed, certain costs are simply shifted elsewhere in state budgets (e.g., medical costs in intermediate care facilities for the mentally retarded (ICF/MR) settings are shifted to state Medicaid programs). When services and supports are unbundled in this fashion and provided in community settings through separate and uncoordinated (i.e., fragmented) service systems, they likely cost the same, if not more, to address health care, vocational training, ancillary therapies, mental health services, and other necessary supports than would have been required for comparable services in a large facility.

We are not actuaries and it is not our intent to make an economic case for facility-based care. Rather, we are concerned about the difficulties of accurately predicting an individual's future health care and long-term support needs and the challenge of ensuring that these needs can, on a prospective basis, be met with a personal budget. Many states have chosen to use tools designed for support assessment, such as the Supports Intensity Scale (SIS, Thompson et al., 2004) of the American Association on Intellectual and Developmental Disabilities (AAIDD), for the purpose of setting personal budgets. It should be acknowledged that, alone, such tools cannot perform this goal. In short, using only these tools, it is impossible to accurately predict whether an individual person's budget will provide too little, too much, or the correct mix of services for each individual. As a result, equity, in this context, requires sharing the risk among all persons equally. The only way to achieve full equity, therefore, is to ensure access to a comprehensive package of health care and long-term care benefits for all eligible individuals and create a system that will allocate these benefits fairly.

A few recent evaluations have compared participants in self-directed systems that provide individual control over budgets with individuals and families remaining on waiting lists (e.g., Caldwell & Heller, 2007). Not surprisingly, in this somewhat lopsided comparison, consumers using personal budgets were more satisfied than consumers on waiting lists. However, the question of adequacy of supports remains troubling to us. As health care providers for persons with developmental disabilities, we serve as a bridge between the acute-care and long-term health care systems. Several of our patients have chosen to adopt personal budgets and have lost certain other waiver services as part of the agreement. Some are pleased with personal budgets, whereas others are not.

Two cases illustrate the experiences of consumers with personal budgets. B.H., a 35-year-old man with severe intellectual disabilities and spastic quadriparetic cerebral palsy but no history of seizures or problem behaviors, has successfully remained in his family's home. His funds are used to purchase adaptive equipment, make accessibility accommodations in the home, and purchase staff time to support community integration activities. It is worth noting that these funds are used, in part, to purchase services and equipment that are also covered by the state Medicaid plan. The family prefers to use funds from B.H.'s personal budget for these items because of the ease of use and because of the restrictions imposed by the Medicaid program.

In contrast, D.G. has had a less positive experience. He is a 31-year-old man with Asperger syndrome, mild intellectual disabilities, and obsessive– compulsive disorder. His family uses D.G.'s funds to purchase companion services and would like to purchase behavioral supports. They report high levels of dissatisfaction with the quality and quantity of the companion services—individuals they hire regularly fail to show up for work and/or do not address the specific goals identified for D.G. In addition, D.G.'s family has been unable to find any qualified behavioral supports because the hourly rate set in the budget is well below market rates.

It is possible to build effective systems of community services and supports that are adequately funded, clinically appropriate, and embrace consumers' desire for choice of provider. States must begin by defining a range of benefits that can be offered to eligible consumers based on need. Individual assessments of need and anticipated service utilization can be measured using standardized instruments, such as the SIS (Thompson et al., 2004), with data aggregated to indicate to states the likely need for services across the entire system and their anticipated costs. These are the basic building blocks of any actuarially sound insurance system.

With the utilization and costs of anticipated service and support needs identified, the major challenges relate to creating mechanisms for making a determination of what services are appropriate for each person and ensuring that the consumer has options for obtaining them. To address these needs, several infrastructure components need to be developed. First, states need to create a market of qualified service providers. This requires the establishment of fair rate-setting mechanisms and credentialing requirements to ensure an adequate supply of qualified providers who can create a network from which an individual can choose his or her preferred clinician. Second, states need to create an evaluation component based on interdisciplinary professional assessments to determine the appropriate types of services and supports required for each individual. This clinical assessment can be linked to support needs assessments (e.g., the SIS; Thompson et al., 2004) and to an authorization system, ensuring consumers their right to obtain services from the provider network. Third, data collected from provider payment claims should be used to address systemic quality improvement efforts and to evaluate clinical outcomes, including consumer satisfaction (Walsh & Kastner, 1999). Fourth, states must continue to assert oversight for services and supports that require it (e.g., the use of certain behavioral interventions) in order to prevent harm.

Some states have used this type of approach to provide community-based services and supports either in part or entirely. The benefits of this approach are that risk is spread across the entire population; in other words, individual consumers and their families are not at risk for extreme out-of-pocket payments if personal budgets prove insufficient. In addition, this model enhances the role of interdisciplinary professional assessment. Interdisciplinary assessment of actual functional service and support needs is critical in that it helps to assure competence and appropriateness in the identification of service needs. This model also supports the goal of enhancing consumer choice as a means of directing ones' own services and supports. Last, aggregated service data can be used for the purpose of utilization management and continuous quality improvement.

Although no state has yet gone beyond this approach, implementation of such a system would also allow the integration of the acute-care and long-term health care systems to ensure a lack of redundancy and improve clinical outcomes. For example, it is well known that challenging behaviors commonly encountered in persons with intellectual disabilities are etiologically multifactorial, often arising from unmet health care, psychiatric, and/or environmental factors. Integration of traditional health and mental health interventions funded through the health care system (usually Medicaid and Medicare) with behavioral interventions funded through the long-term care system (usually the Home and Community Based Waiver) would be superior to what currently exists. Furthermore, such integration would raise the possibility of applying principles of health care management, now generally limited to health care, to a broader range of individual problems (Kastner & Walsh, 1999, 2006; Kastner, Walsh, & Drainoni, 1999).

At the moment, the movement toward personal budgets to ration long-term service and support funds is robust, particularly given the incentives created by Olmstead and the New Freedom Initiative (The White House, 2001). However, we are certain there will come a time when such budgeting practices will be found to be inadequate, and we believe that discussion will return to the types of approaches we have described here. In the meantime, we hope that advocates for persons with disabilities recognize the implications of the decision to reject the principles that were embraced when advocating for health care reform. In addition, we need to understand that the move to individualized budgets places some people with disabilities at risk of being unable to obtain important services because they cannot afford them with their allotted funds, or because there are no practitioners of the particular service needed.

Last, we hope that advocates will come, once again, to an understanding of the value of population-based reform; that, given the lack of predictability of future individual needs, it is important and beneficial to share risk equitably. Perhaps it is a good time to revisit the principles articulated in the 1990s in regard to health care reform and see how they can be used to create the future system of long-term community services and supports. It is possible that by integrating the principles of universal health care with the values of self-directed supports, we can create a comprehensive, less fragmented, and more flexible and individually appropriate community system of acute-care and long-term health care services and supports.

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Author notes

Authors: Theodore A. Kastner, MD, and Kevin K. Walsh, PhD (kwalsh@ddha.com), Developmental Disabilities Health Alliance, Inc., Quality Management and Research, Vineland, NJ 08360-1865