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How Should We Deal With Funder-Mandated Data Collection in Human Services? By Lisa Radcliffe With the broader proliferation of technology into the human services arena, the stakes have been raised in the age-old debate over cause and effect in client service delivery. It is now possible to gather numbers for large groups of clients receiving a vast range of services and attribute "outcomes." That technology, coupled with a flagging economy and rapidly shrinking social service dollars, has prompted the cry at federal, state, and local levels for the employment of technology to improve the efficiency of human service expenditures. Our Situation and the Lurking Dangers Currently in New York State, agencies at all levels of funding and regulation are approaching the same requirements in parallel processes, with no concrete plans regarding opportunities for cooperation, economies of scale, or the impact on providers and their clients. For example, the Federal Department of Housing and Urban Development (HUD) has mandated compliance with the 1998 Stewart McKinney Act, requiring the collection and reporting of as-yet unspecified data elements as a condition of program funding. The mandate itself, however, is unfunded. Similarly, New York State's Office of Temporary and Disability Assistance and the City of New York are seeking to address the same deceptively simple questions using computerized client tracking and case management systems:
Moreover, these seemingly innocuous questions merit thoughtful, meaningful, and engaged dialogue regarding outcome measurement and target population definitions, data standardization, collection methodology, and privacy and confidentiality. What do we mean when we use these phrases? Do we share a common standard? Or are we applying a host of different meanings and their attendant expectations to these issues? And, perhaps most critical of all: How do we calculate the real cost of these system mandates for nonprofits and arrive at a concrete understanding of how they impact and serve the clients? Similar unfunded mandates have previously been adopted by New York City and State, including the ANCHoR (Department of Homeless Services) and Connections (Administration for Children's Services) debacles. The costs of these systems mandates are always very real. Whether it includes the quantifiable costs of hardware and software or the less quantifiable costs of training, loss of productivity, staff burnout, replicate data entry with its attendant keying errors, and a new need for technical support staff, the burden of such systems has inevitably been borne by nonprofit providers, then by their staff and clients in turn. What Happened with ANCHoR: A Cautionary Tale During the ANCHoR implementation a case management system which the New York City Department of Homeless Services (DHS) mandated to its contracted provider agencies in the late 1990's no-cost, stand alone PC's were distributed to some of DHS' providers. No provisions were made for telecommunications (connectivity), on-going training, lost staffing time, on-going support (both technical and non-technical), or documentation costs. In an attempt to manage within its own budget constraints, DHS adopted the position that compliance was part of the service provider's contractual obligation to the City, with no additional support or budget relief extended to provider agencies. This implementation methodology quickly resulted in front-line staff frustration and disillusionment, missing or inaccurate data, lost productivity, redundant processes (sometimes including entry of the same data on the same client into multiple "mandated" systems, as well as the provider's own manual or digital systems), and an overall decrease in resources available to client service delivery. As the problems continued to "trickle down," the most vulnerable of populations, those seeking support from our human services systems, paid the ultimate price. Collapsing under its own weight, the implementation failed. Creating and maintaining informed consent among clients is also overlooked as both a process and cost of these systems. The client population is woefully underserved when it comes to education, information, and self-determination regarding the collection and sharing of personal, confidential, and sensitive data. Federal, state, and local regulations regarding the collection and sharing of such data are widely misunderstood by decision makers at all levels. Even the policy makers have abdicated their responsibility by requiring the contracted service provider to review all such mandates for conflicts with existing legislation, including the Federal Privacy Act and HIPAA (Health Insurance Portability and Accountability Act). Nonprofits will need high-powered legal, policy, and technology consultants just to negotiate these complex and potentially dangerous mandates. Looking for Solutions While these concerns are relentlessly familiar, thanks to many long years of debate, the technology solutions available have changed since the discussion began. It is necessary at this juncture to re-examine and understand both the ends and the means using an organized, multi-jurisdictional approach. There may be ways to facilitate true service delivery improvement and effect long-term cost efficiency and productivity goals. Further, it should be done without damaging existing functional structures and processes, or placing undue burden on nonprofit providers and their clients. A fundamental development that exists today is the ability for disparate systems to exchange data. Using standardized data elements (identifying clients, services, and costs with agreed upon naming conventions), multiple-funder reporting requirements can be fulfilled and service referrals can be made using a single point of entry and an automated data transport and exchange process, removing any re-keying risk. This would support through an organized, collaborative approach the use of multiple systems as appropriate to the provider, exchanging data in a real-time (or close approximation) transfer process that would range across disparate systems. Many other state and local consortia across the country are piloting such collaborations right now. What Happened with the Extranet Project? A New York City pilot project using XML as a data transport system was proposed by the Human Services Action Group (HSAG) in 1997. The HSAG proposal included three different tests of the data interchange concept:
As City administrations, agendas, and fiscal realities have changed over the past six years, the Extranet Project, as it became known, and which was adopted by the Department of Information Technology and Telecommunications (DoITT), has also changed in scope and purpose. Many of the original advocates are no longer involved and the vision has become clouded by competing priorities and lack of sustained interest and funding. The risk at hand, as the City reconsiders this project, is that the ANCHoR and Connections failures of agency-mandated systems will be repeated. The necessary dialogue has begun at the City's inter-agency level, but it has yet to reach out, inform, and embrace the nonprofit community and its constituents. (To read more about the Extranet Project, please see "The Human Services Extranet Project" in this issue of TECH NEWS.) http://www.unitedwaynyc.org/technews/v6_n3_a1.html What was HIMS? Also during the late 1990's a group at the State level attempted a consolidated outcome measurement database, known as HIMS (Homeless Information Management System). HIMS was created under the auspices of the Center for Technology in Government and the Office of Temporary and Disability Assistance in Albany. A range of service providers from Suffolk and Westchester Counties participated, along with New York City's HRA Domestic Violence division and a number of nonprofits predominantly working in homeless services. This pilot ran through to a successful conclusion, proving its concept: that disparate systems and providers in multiple statewide jurisdictions with varied client populations could provide data and outcome measures across mutually agreed upon data standardization and sharing conventions. Unfortunately, a shift in state politics prevented this project from receiving funding on a larger scale and the results of the pilot have languished. What We Must Do While we ponder the digital future and its promise of smarter, better, faster, cheaper human service delivery, it is vital that we review and revisit some of our hard-won lessons of the past in an effort to move the dialogue forward. The lessons are there. The original visions of the HSAG Extranet and the HIMS project should continue to guide our future efforts. They are, as yet, untapped models which deserve our attention. Lisa Radcliffe has a long history of technology service to nonprofits in New York City and is a member of the Tech News Editorial Board. This article represents her opinions and does not necessarily reflect those of other Editorial Board members. She can be reached for question or comment at asklisaradcliffe@hotmail.com. |
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