In the 1980s and into the 1990s, most state information systems operated by or for state developmental disabilities (DD) authorities were mainframe systems, where the software, data, and processing all rested in one central computer. These were centralized systems run by the state. They were data-collection and reporting systems generally designed to meet the authority's system-level need for periodic census, consumer, service utilization, quality, and cost information. Data were submitted to these systems by state authorities and provider organizations (local agencies). They were submitted on paper, diskette, or through the transfer of an electronic file that conformed to strict data definitions and formatting standards. The data were often inaccurate and incomplete due to limited buy-in on the front-lines, insufficient system funding, and inadequate management, training, and quality control.
Over the past decade, mainframe systems have given way to (a) personal computer (PC) systems, where software, data, and processing all rest in a single PC or a group of locally networked PCs and to (b) client/server systems where software, data, and processing are distributed among office PCs (clients) and servers (central computers). Today, it would be hard to find a local agency that does not use computers to meet its reporting and billing requirements and to address its many operational needs (e.g., word processing, accounting, case management, scheduling, fund raising). However, these PC-based systems have limited power and data-sharing capacity. Client/server systems are more powerful and able to share information within an organization; however, they can be difficult and expensive to manage and maintain, and data-sharing continues to be difficult across organizations having different software applications and operating systems.
In recent years, web-based systems have been gaining favor as the system of choice for state DD authorities. These systems allow any authorized user with an internet browser to access the software, data, and processing power of servers over the internet. Data can be shared across different software applications and operating systems. These are essentially mainframe systems whereby users need not be wired into the system to connect.
A handful of states have functioning systems or systems currently under development. State DD authorities are seeing web-based systems as a cost effective way to regenerate their mainframe data-collection/reporting systems, to satisfy Medicaid's demands for Health Insurance Portability and Accountability Act (HIPPA)—compliant eligibility, enrollment, billing, and payment transactions in order to manage today's more complex fee-for-service and capitated billing systems, and more. It is the more where trouble looms. Led by eager system developers, states are fashioning systems that extend beyond HIPPA requirements and beyond the “system management” province of state DD authorities. In much the same way as the mainframe systems before them, the web-based systems are being designed for the needs of the DD authority alone, with too little attention to the needs of local organizations. The involvement of local substate agencies and providers is often too little, too late in the development process. The result is unmanageable data-capture requirements, systems with local data input but no provision for them to access these and other system data and systems that compromise rather than promote local productivity— where the bulk of the work of supporting persons with disabilities occurs.
The big difference between the advent of yesterday's mainframe systems and today's web-based systems is that most local agencies already have automated systems. “State” DD systems today are effectively comprised of these many different systems run by substate organizations and provider agencies. State DD authority data collection, reporting, and payment systems are but a part of this highly distributed network. Local agencies have their own computing power capable of collecting, storing, and disseminating data and software; data and software are no longer confined to the mainframe under the management of the state information systems department; they reside on many different computing platforms in nonstandard form all over the state. These distributed systems continue to grow in order to address the many operational requirements to which local agencies must attend—only some of which emanate from state DD authorities.
The attempt of state web-based system initiatives to effectively re-centralize the management of these systems and, in so doing, control and standardize them makes sense only when the state systems are functionally comprehensive enough to replace the systems currently being run by the local entities. When they cannot, state web-based systems can and should simply specify their information requirements and leave it to the local agencies to collect, process, and meet these requirements through existing systems. There are three important reasons.
First, there is considerable disruption and loss of productivity in front-line systems and related operations when agencies are forced to shut down or modify their systems in favor of piecemeal systems imposed from the outside by state DD authorities and other administrative and funding agencies.
Second, front-line systems are necessarily real-time systems, where access to information and the exchange of information must be possible on demand. There is little justification for state authority subsystems to be real-time, and the cost to develop and maintain real-time systems statewide is prohibitive. The batch transfer of data is more than sufficient for most state authority oversight, management, and payment purposes.
Third, front-line systems must of necessity be flexible, able to accommodate the ever-changing needs of consumers and families, policy and program directions, and administrative requirements of the state and other interests. Standardized systems and web-based codes are characteristically inflexible. State authorities should use to advantage what the web-systems offer—the ability to connect and exchange information efficiently with the wide array of applications and operating systems. Alarmingly, state DD authorities in at least 2 states are doing just the opposite, telling local entities that they cannot accept electronically transferred information into their systems and, hence, forcing local agencies to incur the added time and expense involved in entering the same information into both the state authority's system and their own. The reason given is inadequate security. If inadequate, it is certainly not owing to technological capacity. Available “firewalls” (hardware/software designed to prevent unauthorized system access) together with encryption (coding) and authentication (to ensure the legitimacy of the user) are more than adequate to assure security. The added cost of these measures does not begin to approach the cumulative cost to front-line agencies of having to key in the same information twice.
State DD information systems are a backroom issue, understood and of concern to relatively few. Hopefully, this article will help bring the issue to the fore. Money spent on the development of ill-designed information systems and the added time and expense for the local entities coming in their wake, are services and supports lost to consumers and families. The history of government information systems is one ridden with failure: systems overly ambitious in design, poorly managed and maintained (Rocheleau, 1997). State decision-makers need to take a hard look at these important DD system initiatives, reign them in, and keep them in check.
Author: John Ashbaugh, MBA, Vice President and Director, U.S. Operations, Danic Technology, Inc., 95 Warren St., Needham, MA 02492. firstname.lastname@example.org