Impact Feature Issue on Consumer-Controlled Budgets and Persons with Disabilities
Individual Budgeting, Control and Support: What Systems Need to Tell People
Recent initiatives in state developmental disabilities systems are demonstrating the positive outcomes that can occur when people with disabilities control the supports they receive. While significant progress is being made, the shift to self-directed systems requires a broad-based commitment and bureaucratic flexibility that is frequently difficult to achieve. In contrast to past initiatives, self-direction does not involve a straightforward transition from one type of service model to another. Self-direction is not a type of service, but an approach to configuring the way supports are made available to the people who need them that requires changes in the fundamental building blocks of the system itself.
A Framework for Empowerment
The ability of the individuals receiving support to direct and manage the services they receive rests on the power they have to influence decisions related to funding, staff selection and supervision, individual program planning, and outcome assessment. In self-directed services, people are empowered through individual budgets that give them decision-making authority over the expenditure of the funding that is allocated to pay for the services identified in their individual plans of care. The individual budget can increase a person’s access to the services they need by enabling them to purchase supports that are not available through the traditional systems of service delivery.
State policies regarding the development and implementation of individual budgets differ from one jurisdiction to another. Each approach, however, must:
- Identify a person’s needs.
- Select services that best address the needs
- Determine the amount of service or support necessary to adequately address each need identified.
- Determine a cost or an amount to reimburse the providers of the service.
- Integrate the services together into a set individual budget amount.
- Establish policies and procedures for filing claims and receiving reimbursement.
The process of individual budget development may appear straightforward. Each step, however, reflects a number of interlocking policies and procedures that must function in concert to achieve outcomes that are fair, accurate, valid, practical, and above all, understandable by people receiving support and their families. Self-directed services in general, and individual budgets in particular, offer opportunities for individual control and decision making that are not available from traditionally structured programs.
People with disabilities and their families are interested in gaining increased control through self-direction and individual budgeting, but many are frustrated by the complexity of the process and express concern that they do not have the information they need to make informed choices regarding participation. Individuals considering the move to self-directed supports want to know how the process functions across their state and throughout the country, and what they should look for in deciding whether or not this approach is right for them. This article describes the key features of state individual budgeting procedures and identifies issues that should be considered by individuals and families as they begin directing their own individual budgets.
In response to increasing requests for information and technical assistance on individual budgeting practices nationwide, the National Association of State Directors of Developmental Disabilities Services (NASDDDS) recently surveyed state officials on the nature and extent of the practice in their respective states (Moseley, Gettings and Cooper, 2003). Eighty-four percent of the states responded to the survey. The key findings of this study, described below, identify the extent to which individual budgets are in use nationally, and highlight key aspects of the individual budget development process that people with disabilities and their families need to understand in order to become informed individual budget “consumers”:
- Individual Budget Availability. Individual budgeting options were available to people receiving publicly funded specialized DD services and supports in 75% of responding states. The extent of the availability of individual budgeting alternatives varied considerably, with the majority of states indicating that a basic individual budgeting process was in place, but it was limited by geographical area, funding mechanism or program type. Eligibility to receive an individual budget was influenced by the nature of the funding received and the type of program in which the person was enrolled. States, counties, and provider organizations need to help people receiving support and their families understand how the individual budgeting process works and the factors that influence availability and eligibility in their area.
- Assessing the Need for Support. State individual budgeting strategies generally employ one of three approaches to assessing an individual’s needs. The first method can be described as a “developmental” approach that identifies and evaluates the needs to be supported through the person-centered planning process, relying upon the members of the individual’s program planning team or “circle of support” to select the essential objectives to be achieved. The second “statistical” approach uses a standardized needs assessment protocol to identify needs and in some cases, set allocations. The third method combines elements of the other two approaches to inform decisions of the circle of support and individual program planning team. It is important that individuals receiving support and their families understand the process through which the individual budget is developed and implemented. State agencies and provider organizations need to communicate to individuals with disabilities and their families the basis upon which their needs are identified and evaluated for funding.
- Determining an Allocation Amount. The majority of states determine the services and supports an individual is to receive and the amount of the individual budget during the person-centered planning process.* Almost 70% of the states responding to the survey reported that individual budgets were derived through a “developmental” process based on discussions of the person’s needs for support and assistance. Approximately 30% of the states responding to the survey separated the process of determining individual funding allocations from decisions regarding how a person’s funds are to be deployed. These states typically use statistical processes based upon standardized tools, such as the Inventory for Client and Agency Planning (ICAP), the Developmental Disabilities Profile (DDP) or another state-specific instrument to determine the individual funding allocation or target budget. In the individual budgeting process, states determine the rates they will reimburse service providers in several ways, including:
Self-directed systems of support must be flexible in order to encompass the wide range of different activities offered by both traditional and nontraditional services. The funds identified in the individual budget should not be tied to agencies or particular providers of service, but rather to the individual. Funds need to be portable and able to “follow the person.” States need to communicate to individuals and families receiving support the process by which the overall budget amount is determined in their state. In addition, states need to help them understand the method used to determine the amount of funding that will be made available to purchase each of the individual’s services identified in the person-centered plan.
- Spending Limits and Responding to Changes in Support Needs. Almost 75% of state respondents reported that the process of individual budget development results in the establishment of a set amount of public dollars (a spending limit) that is made available to finance services for a particular eligible recipient. While the budgeting process may identify a spending limit or set amount to cover the cost of services, the funding level must be able to be changed based on the needs and services identified in the person’s “plan of care.” The individual budget cannot “lock-in” a person to a fixed rate that is unable to be adjusted in accordance with changes in support needs. Individuals who are self-directing can be expected to experience changes in their support needs over time for a number of legitimate reasons related to their particular home, job, and social environment. Some changes in service need are minor or temporary and have a minimal impact on the person’s budget or plan of care. Others, in contrast, may require the planning team to reconvene to construct a new service plan and budget. In either case, the process of individual budgeting must be able to adapt to changes quickly and not present a barrier to the identification and implementation of new necessary supports. States need to educate individuals receiving support and their families about how to recognize that additional or different services are necessary and how to request a change in budget amount if the needs are no longer able to be met through current resources.
- Negotiation and Approval. The majority of states set the overall amount of the individual budget through a process of negotiation between the various parties involved in the person-centered planning process. Some states include the individual and family in virtually all funding and service design decisions, while others separate statistically generated funding decisions from the process of selecting supports to meet identified needs. The final authority for approving individual budgets rests with the state in a majority of cases, followed by a county or municipal agencies, local committees or boards. People and families receiving support need to understand how the funding and negotiation process works so that they are able to receive the supports they need.
- Responding to Appeals and Requests for Re-Determination. The majority of states have policies and procedures for filing appeals. Not only should the individual budgeting process be understood by the person receiving support and his or her family, but people should also understand how to appeal decisions that have been made and how to access the training, support, and assistance they need to resolve differences or disputes that might arise.
It is Worth It
In most instances, individual budgeting represents a significant departure from the way services have been traditionally supported and requires changes at all levels in the funding chain from the state, county or designated agency allocating service dollars, to the individual or organization that provides the support. Individual budgeting and the other elements of self-directed services offer the means for people to design the supports they need as they see fit, determine for themselves the role service providers will play in their lives, and decide how the dollars that are allocated on their behalf will be spent. As individual budgeting options become increasingly available, states must actively pursue strategies to assist people with disabilities and their families to develop a good understanding of the process used by their state to set the budget, assess needs, and allocate funding for supports.
* Note: Person-centered planning refers to a variety of approaches to designing support plans for individuals with disabilities. Person-centered planning does not consist of a rigid set of requirements, but rather encompasses an array of values, principles and practices that function to tailor planning activities to the individual receiving support. Key tenants of person-centered planning include:
- The person is the center of any planning activities;
- The intent of person-centered planning is to assist individuals to live the lives of their choosing;
- The individual and those who know and care about him or her are the fundamental sources of information and decision-making;
- The individual directs the planning process that identifies strengths and capacities, desires and support needs; and
Person-centered planning results in personally-defined outcomes.
Moseley, C., Gettings, R., & Cooper, R. (1997). Having it your way: Understanding state individual budgeting strategies. Alexandria, VA: National Association of State Directors of Developmental Disabilities Services.