Costs and Outcomes of Community Services for People with Intellectual Disabilities

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This primarily United States-based seminal publication contains enormous lessons and insights regarding individual, person-centered funding mechanisms for persons with intellectual disabilities. The prestigious editors Stancliffe and Lakin have published the contributions of one Irish and six British academics, along with 26 Americans, in this timely and highly relevant publication. The fourteen chapters are roughly divided into costs and systems architecture in the first half of the book, while the second half examines studies of various individual budgeting practices and their impact on the individual with intellectual disability.

Eleven key issues form the conceptual heart of this book. Although they are not the only issues requiring consideration, careful examination and better understanding of these issues can, nonetheless, contribute significantly to guiding the evolution of service systems that provide adequately supported, individually satisfying lifestyles to a maximum number of individuals within the amount of public resources allocated to their needs. The eleven key issues addressed in this book are:

  1. What is the historical service provision and service-funding context in which service expenditures and outcomes are to be understood?
  2. What are the direct and indirect financial and social costs of family care for family members with developmental disabilities? Who meets these costs, and how have they been allocated between families and society? What implications do these findings have for public policy and family support?
  3. Are there differences in outcomes and costs between the various community living service models?
  4. Are larger inputs (expenditure, staffing) related to better outcomes?
  5. On what basis is funding allocated to pay for community services? Is funding allocated to individual recipients of services according to the person’s support needs?
  6. On what basis should funding be related to pay for community services? How can an individual budgeting process be developed that is rational and equitable and that facilitates individually desired lifestyles?
  7. How are states approaching the task of providing individual budgets to service recipients and their families? … How can an equitable individual funding allocation be made available while managing costs within a service system?
  8. Are there differences in outcomes and costs by funding arrangements [individual budgets versus traditional funding]?
  9. What is the relationship between the size of a residential setting and per-person expenditure on residential service? Is there evidence for economies of scale? Is there evidence for better outcomes in smaller settings?
  10. What is the impact of institutional downsizing on the per-person expenditure on services for individuals who remain in the institution?
  11. What are the policy and practice implications of the findings related to these issues?

The fourteen chapters in this book bring together research findings from state and national studies in the United States and from research conducted in the United Kingdom and Australia. The budget allocation process differs from state to state, but all have the same objectives, i.e. that the allocation is logical, transparent, equitable and accurate. The developmental versus standardised approach is well addressed throughout this book

Concepts such as person-centred planning, self-direction, quality assurance and even individual budgeting are, by definition, individual, variable and subjective. As such, the structure and functioning of a self-directed programme is required to be flexible in order to be tailored to the particular needs and life situations of each person receiving support

This perspective challenges the traditional approach to standardisation and measurement. The process of individual budgeting is new, complex and evolving. It appears clear that ‘best practice’ has not yet been identified. Permitting or even encouraging structured experimentation (among state programmes) to identify the relative strengths of different budgeting formats seems to make a great deal of sense.

But how effective a tool is individual budgeting? Do these strategies empower individuals with disabilities to take charge of the supports they receive (chapters 1, 9 and 10)? Does the move towards individual budgeting force traditional systems of service delivery to change—to increase their responsiveness to consumer needs, preferences, and desires for individual control? What role does individual budgeting play in self-direction? Is individual funding the only viable approach to supporting the capacity of individuals to control their lives (Moseley et al., Chapter12)?

I particularly liked the Decision Control Inventory (DCI) and the staff /client choice measurements, whereby distinctions were made between the actual choice of a service user and service-related decisions that are available to the service user (Stancliffe and Lakin, Chapter 9). The person-centered – system architecture of chapter eleven positions each individual and his/her team to decide what services will best meet the person’s needs and to freely select the service providers.

The Wyoming DOORS Budget Allocation Model makes good reading, with principles calling for tailoring services and supports to each individual’s needs and aspirations. The principles extend beyond allowing individuals and their allies to make ‘choices’, to giving them the authority to make fundamental decisions about their lives in the community, including how, where, and by whom they will be supported (Fortune et al., Chapter11).

The Individual Budget Amount (IBA) dictates that funding should be tied principally to indicators of individual need rather than to provider characteristics or service modalities. Within this budget amount, teams have free rein in designing the best mix of services. The model is NOT a provider rate-setting tool. Flexibility is possible because many factors are not included in the model. While the broad types of services that a person receives are included, their exact location, type and intensity are not. This practice permits planning teams to change support strategies without such changes triggering a change in a person’s IBA. The model contains no adjustment, should the individual use different providers. While this system is not perfect, it is deemed to be fair and equitable and gives both the service user and his/her family greater decision-making authority in the service-planning process.

Felce and Emerson (chapter 3) discuss the cost of deinstitutionalisaton and compare community living with other service models. Their chapter explores the UK research literature and examines the evidence relating to the following questions: Does size of living unit effect outcome? Does size of living unit affect cost per person? Does cost-per-person and/or staff-to-resident ratio affect outcome? The empirical support for these propositions is, at best, equivocal. Large living environments, such as institutions and hostels, provide poorer outcomes than domestic-scale settings; however, among domestic-scale community residences (1-6 residents) the relationship between size and outcomes is ambiguous or nonexistent. The existing evidence suggests that diseconomies of scale are only likely to occur in settings supporting three or fewer people, and their operation may be dependent on the level of support needs of residents or the specific model of provision.

The lack of association between resources and outcomes may reflect that (1) resources may not be entirely allocated on the basis of need, and (2) major inefficiencies may be present in the use of available resources. This latter view is supported by evidence that changes in staff training, organisation and management practices can, without additional resources, result in significant improvements in outcome. Whatever the reasons, basing policy decisions on either the level of resources or the structural characteristics of residential services provides no guarantee of delivering better outcomes for people with intellectual disabilities (Felce and Emerson, Chapter 3).

Investment by administrative and advocacy agencies is required to assure that the essential conditions for cost-effective, individualised supports exist. The five areas of high importance for this investment are: access to information; support for person-centered-planning; fair, transparent, individualised, resource allocation; development of a qualified direct-support workforce; and quality monitoring and improvement. Fundamental system change is the only way forward.

In June 2001, President George W. Bush signed an Executive Order stipulating that the ‘United States is committed to community based alternatives for individuals with disabilities and recognizes that such services advance the best interests of Americans’ (Lakin and Stancliffe, Chapter 14). Hopefully this sentiment will be echoed on this side of the Atlantic.

In conclusion

This important and highly useful book has been written at last. It is now available for in-depth study by all those involved in policy decisions.

Forging a radical, fundamentally new paradigm from the chrysalis of established systems and approaches will take hard work and considerable fortitude—to develop an evolving paradigm that will guarantee an equitable, rights-based, personally-fulfilling lifestyle for all Irish citizens with intellectual disabilities. Anything less is no longer an option in a post-Travers 21st Century Ireland.

E. Anne McCarthy, Research Officer, Stewarts Hospital Services Limited

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