ISSUES AND CHALLENGES IN
DEVELOPING INDIVIDUALIZED SUPPORTS

It is important to build a common understanding of what we mean by individualized. This process of building a common understanding of individualized supports will entail the following:

At the direct service level, providing individualized supports means learning to:

• remain available to people as their interests and needs change;

• continuously increase the effective control people have over the supports they receive and the choices they make in their lives;

• revise and repair supports as people change and as better information becomes available;

• actively negotiate for necessary changes in agency and system practice and policy;

• make the best possible use of available system funds.

At the agency management level, providing individualized supports means learning to:

• match people with developmental disabilities and support people and sustain and contribute to the improved effectiveness of these relationships;

• focus problem solving and active search for community opportunities;

• develop community opportunities such as accessible housing and transportation, recreational opportunities, and jobs

• make available system resources as flexible as possible as opportunities and support needs change and actively negotiating for necessary changes in system policy and practice.

At the system level, providing individualized supports means learning to:

• negotiate common mission, strategies, and mutual accountability among the people and agencies that provide and govern services;

• continuously increase the flexibility and responsiveness of available public funds by creating new ways to insure accountability and new ways to budget and disburse funds.

• discovering and communicating what is possible for people with developmental disabilities;

• promoting learning from action by discovering and disseminating what works and what doesn't work in providing individualized supports;

• systematically shifting the system's "center of gravity" from group provision to individualized supports;

• clarify the difference between truly individualized supports and improved versions of traditional approaches.

Significant resources are still being directed toward traditional agency-owned and agency-controlled services for groups of people. Most agencies that are providing individualized supports also direct large amounts of resources into traditional, facility-based services. Proceeding in these two directions at once is incompatible, both philosophically and programmatically. Continued effort needs to be placed on directing increasing proportions of resources into consumer-controlled, individualized supports.

The energy and resources directed toward developmental center closure will divert energy and resources from the provision of individualized supports. In the interest of timely closure, significant numbers of people will likely be placed in settings that are community-based, but not truly individualized. Effort should be made to ensure that these settings are created in such a way that they can be dismantled later (e.g., avoidance of purpose-built facilities and agency-owned facilities). In this circumstance, how many people benefit from individualized supports depends on how effectively service providers and local advocates deal with four key issues: (1) building commitment to organizing individualized supports; (2) redesigning systems and reorganizing patterns of service to provide individualized supports; (3) systematically, and very substantially, decreasing the time elapsed between identification of an individually responsive service activity and the final decision about allocation of DSO resources to provide that service; and (4) managing the closure of developmental centers in a way that frees resources (including leadership time) to focus on developing individualized supports.

As individualized supports are created, it will be important to include people with the most severe disabilities among those who benefit from these services. Many agencies have greatly increased their capacity to provide individualized supports to people with challenging behaviors. There are many fewer examples of people with the most severe disability labels (physical and intellectual) in individualized settings. Agency staff members often feel that inadequate funding rates are the greatest barrier to this. States and local agencies will need to work together to overcome these obstacles and find solutions which enable all people with disabilities to be supported in individualized ways.

Attention should be paid to avoidance of a situation in which agencies are pressured to expand and serve increasing numbers of people. Agency size is a critical factor in the provision of quality, individualized supports. Where necessary, effort should be directed toward the creation of new agencies, rather than pressuring or encouraging already large agencies to grow ever larger.

Person-centered planning is a tool that can be used to aid in the creation of individualized supports for a particular person. This tool will lose its effectiveness the more it becomes systematized and routinized as a way of planning across large numbers of people.

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