A large state, under federal and state legislative mandates, must decide how to integrate its stores of information about people with disabilities and the services they receive from a variety of state agency programs. Operating agencies responsible for various segments of the client population, coordination and control agencies responsible for sound financial and policy decisions, and legislative representatives are all legitimately involved. Each has a different set of needs and a different solution to their mutual challenge.
State-sponsored services to people with disabilities are provided through a complicated system of programs of various sizes and intensity, authorized or administered by several state agencies. Services range from residential programs in institutional settings where most of a client's needs are met on the grounds of a facility to day services, including employment programs, where the goal is to assist a client to become a fully functioning member of the community. In some cases, the programs offered do not differ a great deal from agency to agency. Clients can gain access to the same program through more than one referral mechanism and, in certain instances, can be considered to be a client by more than one agency at the same time. This duplica
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tion in service is accompanied by a lack of certain kinds of services that are not presently provided by any of the agencies. The system has caused difficulty for planners and policy makers in their attempts to eliminate these gaps and overlaps, and to plan for the disabled population in a comprehensive way. Disabled people and their families have continuously advocated for a unified service system and have found sympathetic ears in both the current governor and a respected state senator.
Funding for disability services has always been limited, putting agencies in competition with one another for scarce resources. The resulting lack of cooperation between agencies is manifested in poor communication and an unwillingness to share information or otherwise assist one another in the planning process. A well-known fact underscores the severity of the situation: two of the commissioners of agencies involved in disability services have never sat together at the same table to discuss mutual service or planning issues.
A new federal law has recently been enacted that changes the requirements for reporting information on disabled individuals and the services they receive. The requirements are part of a new program that provides higher rates of federal reimbursement for disability services-in certain instances up to 75 percent of the cost of care. States are to report on the number of individuals being served as well as on units of service provided. The state could gain substantially under the new program if it can show that its historically high level of service units also represents a high rate of service coverage of the entire population of people with disabilities.
State Senator William Benecet, chairman of the Committee on Services to the Disabled, sees this legislation as a key lever in making the kinds of changes he has consistently urged in the the state's disability services programs. The senator has long been an advocate for service coordination, and he has tried in the past to convince the governor's staff and commissioners of the involved agencies that cooperation would work to their mutual advantage. Two years ago, he successfully negotiated a bill with the Administration and the General Assembly to create a Commission on Services to the Disabled (CSD). The CSD is a small coordinating agency whose function is to smooth out disagreements between the operating agencies, to identify gaps and overlaps in the present service system, and to coordinate the policies and activities of the agencies that provide services. The CSD began with an executive director and six professional staff. As its first initiative, the com- mission took on the considerable task of compiling a Budget for the Disabled, a document that presented for the first time in one place a description of the services available to the disabled population, and their associated costs. The production of this document gave staff at CSD some valuable experience and an opportunity to quickly become familiar with the policies and the important players in the service delivery system. The quality of their efforts also helped establish some credibility for the fledgling agency, which
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nevertheless continues to be eyed with some suspicion by the others. At present, federal grants and funding from private foundations have increased the size of CSD's staff to twenty.
Benecet is optimistic that the new federal financial incentives will provide the impetus for cooperation among the agencies which has heretofore been lacking. To this end, he sponsored a successful bill, the Disability Services and Information Act, which requires agencies involved in disability services to comply with the new reporting standards. The new state law calls for development of a computerized tracking system on disabled individuals that would combine information from the four state agencies currently involved in disability services. It is to be called the System for Services to Disabled Individuals (SSDI).
The senator has been frustrated over the years by the lack of coherent, reliable, and, above all, comprehensive information about the population needing services and about the services themselves. As the bill was being drafted and negotiated, Benecet's key staffer, Edward Fitzjerald, convinced him that a strategic database could be built to support the long-range, policy-oriented information needs that needed attention. Benecet therefore took the opportunity to expand upon the reporting requirements of the federal law and included language that outlined the content and uses of a new database that went well beyond simple tracking and reporting. Working with representatives from the governor's program staff and the State Budget Office, the senator's committee convincingly outlined the potential of the new database for use in planning, research, and policy making related to programs and services for people with disabilities. The requirements for the SSDI, therefore, include specific references to financial claims for services to individuals; historical records of services provided and agency actions; programwide trends, statistics, and management reports; and needs assessment data. (See Appendix A for text of the statute.)
Like many other federal laws, the new national disability services statute requires the designation of a single state agency to be the conduit for federal funds and the reporting agent at the state level. This requirement posed a major dilemma in naming the agency where the SSDI should be housed. The Department of Services to the Disabled (DSD), the lead agency in provision of services to this population, is known for its reluctance to share information or otherwise cooperate with other agencies in an area that it feels should be under its exclusive purview. The DSD does, however, have the largest data processing capability of any of the involved agencies and serves the largest number of clients. Initially, DSD opposed the development of the SSDI, arguing that each involved agency should take care of its own reporting to the federal government, and that there was no need to develop SSDI at all. However, once it became clear that neither the federal government nor Senator Benecet shared that interpretation, DSD lobbied for the SSDI to be housed there. DSD staff made their public argument on the basis
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of the agency's superior technical capabilities, but they also intimated that if the system were to be placed elsewhere, the degree of cooperation forthcoming from DSD would be minimal. Lacking persuasive counterarguments, the state law named DSD as the single state agency and the home of the SSDI.
There are four agencies involved in provision of services to disabled people, all of which have been named in the legislation as participants in SSDI. The heads of all four agencies have been briefed by the governor's program director and have pledged their cooperation.
DSD is the largest of the four agencies, serving fifteen thousand persons at any point in time in some type of residential or day program. DSD has a computerized tracking system and can identify each of the individuals in its care and the services they are receiving. The DSD system, however, has been in operation for twelve years and is not completely equipped to meet the requirements of SSDI. Its major failing is the lack of a historical tracking capability. Data are entered and maintained and reports are produced on a quarterly basis, with no built-in capability to link information about the same person between quarters.
A year prior to the passage of the SSDI legislation, DSD had requested and received funds to redesign its own system. Responsibility for the redesign fell to Dick Higgins, director of Information Services. Higgins is a veteran information technology professional, with twenty-five years experience in the field. He has traditional views on the uses of computerized data, and a strong belief in centralized processing and data ownership. It was with some reluctance that he contracted the work of developing the redesign to an outside consultant rather than taking on the job in-house. Higgins is pleased with the hardware component of the contract, having decided against a system with strong distributive processing capabilities and selected a system known for its processing speed against large files. Disagreements between Higgins and the consultant as to the exact requirements of the system, however, have caused the project to get off to a slow start.
In part, Higgins's problem is the lack of a clear idea on the part of agency users as to how the redesigned system should be used. This confusion, coupled with strong feelings on the part of the DSD commissioner that assessment data should not be entered into the system due to the dangers of "labeling," has resulted in continual revision of the data element dictionary and general system design. Communication between Higgins's data process-
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ing staff and program staff at DSD is poor. At present, the redesign of the DSD system is six months behind schedule.
Higgins has made little effort to further the development of SSDI, being understandably unhappy about having to worry over a new system in the middle of his redesign. He would nevertheless be very reluctant to send his data to another agency for input into the SSDI and has therefore not argued against housing the system. Higgins's approach has been to assign the work on SSDI to a junior member of his staff, who has been instructed to avoid commitments and to keep Higgins informed of any developments.
DED is the second largest service provider, responsible for educational services to eight thousand disabled children and adults. DED programs are both residential and nonresidential and, in many instances, children and adults attend the same program. DED is administered in a decentralized fashion, having eight regional offices throughout the state with general oversight of the school programs in their respective geographic areas. The regional offices operate with some degree of autonomy. In keeping with this structure, the data processing capability of DED is microcomputer based, with each regional office maintaining information on its own clients. Client information remains at the regional offices and is aggregated and reported, in keeping with the requirements of the DED central office, primarily for billing purposes. Although there are no individually identifiable records maintained at DED central office, an attempt is made to assign unique identifiers to clients in the micro-based files via a call-in system to DED central office, where a name search file is maintained.
Central office data processing, as well as the somewhat loose administration of data processing across regional offices, is the responsibility of Henry Mabley. Mabley, who operates under rather severe budgetary constraints, runs an efficient system that responds accurately to tightly defined requirements from the agency administration, most of which are outlined in statute. Mabley therefore makes no attempt to share data with other agencies, even though certain programs used by DED through purchase of service arrangements are also serving clients of DSD and the Office of Children's Services.
The population of disabled children is a small subset of the clients served by this agency. Its disability service programs are dwarfed by comparison with day care, foster care, teenage pregnancy, and drug education and prevention programs. In providing services to disabled children, OCS and DSD sometimes share information on individual cases, but at present there is no computerized mechanism for information sharing between these two agencies. Planners at the DSD have complained that the lack of information
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sharing between the two agencies causes problems in the planning of services for children once they have reached adulthood and are ready to move on to the programs administered by the DSD.
Attempts have been made at sharing information between these two agencies in the past but have not been given support by Higgins at DSD or Mary Lennon, his counterpart at OCS. Lennon, in addition to the research and statistics function, oversees a large data processing operation that includes several different systems containing information on a variety of children's services. Lennon is not as concerned with data ownership as is Higgins, but she is bound by confidentiality regulations that prohibit sharing of individual identifying information with any agency not specified in OSC's governing legislation as an authorized agency with rights to the data. Lennon's concern for the current fragmented system of services to children with disabilities has led her in the past to advocate for a change in legislation that would allow data to be shared between OCS and DSD. Lennon's efforts to improve services for disabled children through improved information sharing, however, have often taken a back seat to other issues concerning larger populations of children also served by OCS.
DHS is responsible for medical and health-related services to disabled children under the age of two, to multiply-disabled adults who live in skilled nursing facilities, and to the elderly population residing in nursing homes. It also provides reimbursement to the other agencies for many of the medical expenses they incur for clients in their care.
DHS is a large department with a wide array of services and programs, and a complementary number of computerized tracking systems. While most health-related services information is maintained on large mainframes, each of the disabled populations served by the DHS is tracked on a different micro-based system. Vince Capacola, director of Data Processing for DHS, while nominally in charge of all data processing activities in his department, has taken a laissez-faire attitude toward the micro operations in his department, choosing to concentrate his energies on the larger mainframe operation used to support laboratory work and the monitoring of hospital systems around the state. Capacola has been approached about the SSDI but has stated that he does not see himself as a major player in an initiative of this kind.
Eight months have passed since passage of the state's Disability Services and Information Act. Little progress has been made toward beginning the design of SSDI. Higgins has come under increasing pressure from Michael Dollery
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of the State Budget Office to move forward with the system design. Funds allocated in last year's budget for the design of SSDI were used up in the redesign of Higgins's own system, since Higgins was able to effectively argue that the implementation of SSDI was dependent on a successful DSD redesign. As the new fiscal year begins, Dollery is determined that this scenario will not be repeated.
Moreover, Senator Benecet has complained to the governor about the lack of progress toward SSDI implementation. In fact, to show how easily a competent professional could handle the task, he has forwarded a concept paper prepared by his senior staff adviser, Edward Fitzjerald, outlining certain design options for SSDI. Since the senator's support is needed for important elements of the governor's upcoming legislative agenda, Dollery has been given instructions, in no uncertain terms, to resolve the impasse. Feeling the heat of growing displeasure in the governor's office, Dollery has circulated Fitzjerald's paper for review and called an urgent meeting of the designated project coordinators of all the agencies named in legislation as participants in SSDI. Although not a named participant, the CSD staff were also asked to attend. Dollery begins by outlining the statutory obligations each agency is assigned under the act, and he points out that only twelve months remain before the expiration of the opportunity for higher federal reimbursement rates. The act's sponsors, the budget director, and the governor are not happy with the lack of progress toward implementing SSDI.
Higgins, alert to the possibility that the imminent fiscal deadline will encourage the others to stick by the investment already made in the DSD system, begins outlining the steps he sees as needed to move SSDI forward. Higgins's approach involves wrapping up the design of SSDI with work already under way on his own redesign. Higgins has looked into the existing technical situation often enough to know that all the agencies maintain and define data elements in different ways, in different file structures, and on different hardware. He begins to outline procedures whereby the other agencies would share their data with DSD.
Higgins, however, is barely able to begin presenting his ideas before the other agency representatives interrupt with certain issues of their own. As the discussion proceeds, it becomes clear that for a variety of reasons none of the other agencies are happy about providing data to DSD.
Mary Lennon of OCS begins by pointing out that while her agency agrees in principle with the concepts behind SSDI, and can see the benefit to the population of children "aging out" of the OCS system, confidentiality regulations prevent her from sharing any personally identifying information with either DSD or any of the other agencies named as SSDI participants. Lennon has checked with her agency's legal department and found no basis to support the idea that the SSDI legislation takes precedence over their own confidentiality requirements. Lennon's previous inclinations to advocate legislative changes to rationalize confidentiality restraints obvi-
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ously do not translate into a willingness to become nothing more than a subsystem of the DSD redesign.
Henry Mabley of DED expresses philosophical support for SSDI but goes on to explain that he has no financial resources to put into the work required for him to provide data to DSD. In addition, Mabley points out, the regional structure ofhis reporting system means there is no central database in which the client service information needed by SSDI is maintained. Furthermore, Mabley has neither the staff nor the equipment to develop one. It is Mabley's position that the existing data processing set up at his agency, while not compatible with the goals of SSDI, is sufficient to meet his agency's own statutory requirements. He has no choice but to continue to look to his agency's own authorizing statute rather than the SSDI legislation for operational guidance.
Vince Capacola from DHS takes the position that, as is the case in other aspects of data processing in his department, the individuals who have responsibility for the databases containing information of interest to SSDI are essentially independent operators who, practically speaking, are under no obligation to report their information to him or anyone else in DHS, let alone to an outside agency such as DSD. Capacola is only willing to go so far as to provide the names of the individuals responsible for maintaining data on the three client populations of interest, each of which is maintained on a separate micro-based system.
Following a considerable amount of unproductive discussion, all agree to return to their agencies, review the situation with their respective commissioners, and to return in one week prepared to discuss alternative solutions.
After the meeting, Dollery holds a private conference with Marilyn Foster of CSD. Both of them express their concern with the plight of SSDI, and Dollery voices his suspicions that the participating agencies' primary concern is sharing data with another service provider agency -- i.e., "the competition." Through her work on the Budget for the Disabled, Foster had developed good working relationships with agency staff. Subsequent conversations she has had with Lennon, Mabley, and Capacola confirm this suspicion. Dollery hopes that CSD, in its non-service-provider capacity, might be a more palatable negotiator among the participating agencies in coming to agreement on the design of SSDI.
Foster has certain concerns about taking over as lead agency in the design of SSDI. The CSD is not equipped from the standpoint of either personnel or budget to take on such an assignment. The CSD's work in compiling the Budget for the Disabled had made Foster all too familiar with the complexity of the service system SSDI was intended to capture, and at present the staff at CSD lack in depth data processing experience. In addition, while fairly certain of her ability to work cooperatively with Lennon, Mabley, and Capacola, Foster is well acquainted with Higgins's proclivities to keep his data to himself. After all, the other agencies might have some
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thing to gain by cooperating. Higgins thinks he has everything to lose. Higgins had been difficult enough to work with in obtaining necessary information for the Budget for the Disabled. This new challenge might well be insurmountable. Foster also sees that, were the system to be housed somewhere other than DSD, the same kinds of confidentiality problems would pertain to Higgins sharing his data with another agency as they did with Lennon and OCS.
In his concept paper regarding the design of SSDI, Fitzjerald had raised the issue of the need for incentives for the agencies participating in the system, and he had suggested that each agency be given a data processing staff person to perform the tasks required for SSDI. Higgins had disagreed with this approach, suggesting that the other agencies should simply provide dumps of their data which would then be reformatted and input at DSD. Higgins preferred to have responsibility for all programming tasks related to SSDI, and for continuity and control purposes, to have the staff working on SSDI report to him. The other agencies had objected to this, preferring, as the information experts within their respective programs, to be responsible for any reformatting or manipulating of their own data.
Dollery feels the approach suggested by Fitzjerald is too costly, necessitating the addition of four full-time programmers for what is not likely to be a full-time task. beyond the initial system design and implementation. On the other hand, Dollery is unwilling to provide any further SSDI funds to Higgins unless he can feel confident that there will be swift forward movement on the system design. Instead, Dollery offers Foster enough funding for two staff persons, to be given to CSD under a contractual arrangement with DSD. Foster and her staff will have six months to analyze the situation and make recommendations as to how the state should best proceed.
1.) How should Foster proceed? Clearly, the presence of a legislative mandate does not guarantee cooperation. In fact, one of the major issues facing her is the result of legislation-multiple conflicting guidelines on confidentiality. How can SSDI be developed without changes in the law? Is the ultimate location of the system a factor in the equation? What principles for information security might overcome these objections?
2.) Technology is both a barrier and a solution. SSDI is intended to give the state a comprehensive picture of a vulnerable population and the ser- vices it receives. The current constellation of information systems maintained by the separate agencies, however, mitigate against that result. Yet, they cannot simply be scrapped-they support ongoing, necessary, and expensive service programs. What are Foster's options for dealing with them? What should SSDI look like and where should it be housed?
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3.) How should Foster approach the political barriers to development of the system? What incentives can be offered to the agencies to cooperate in joint system development? How can Foster capitalize on the support of both Dollery and Benecet in bringing about a successful system implementation?
1.) Chapter 2, "Information Policy in the Public Sector," asserts that sound government information management policies combine four perspectives -- the technology itself, economics, organizational factors, and political considerations. Reread the discussion in Chapter 2.
As her staff assistant, draft a memo to Foster that outlines her options from the four perspectives presented in Chapter 2. For each perspective, summarize the salient issues contributing to her decision and make a recommendation concerning what she should do. If the recommended actions differ when analyzed from each of the four separate perspectives, attempt to resolve these differences by creating a recommended action that blends the best from each.
2.) Chapter 5 describes a number of procedures commonly being implemented by government agencies that are challenging how information managers think about personal privacy. Foremost among these procedures are computer matching, front-end verification, and computer profiling. SSDI is technically quite similar to a large-scale and ongoing computer matching project. Discuss how SSDI is the same as and different from computer matching projects as discussed in Chapter 5.
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Section 4. System of Services to Disabled Individuals.
4.1. System objectives. The state, under the authority of the single state agency, shall design, develop, and maintain an automated information system capable of
a. documenting all financial claims to be made by the state to the federal government with respect to services to any disabled person;
b. compiling and maintaining a cumulative historical record of information with respect to state agency actions taken on behalf of each disabled individual in receipt of services;
c. producing regular and special reports of issues and trends to enhance the program planning capabilities of the state agencies, the governor and the legislature;
d. supporting analysis and assessment of the aggregate service needs of the state's disabled population and its access to services;
e. maintaining an interagency statistical information base to allow prompt, accurate responses to information requests from state agencies, the governor and the legislature.
4.2 Participating agencies. Services provided by the following agencies to disabled persons residing within the state shall be recorded in the system:
a. the department of services to the disabled;
b. the department of health services;
c. the division of education for the disabled;
d. the office of children's services.
4.3 Individual records. Each disabled person who receives services from any of the agencies listed in section 4.2 of this section shall be uniquely identified in the system in a manner which assures confidential treatment of personal information and which assures nonduplication of individual records.