Upgrading Lives

The US state of Pennsylvania has improved the lives of citizens with disabilities, installing a sophisticated information system that tracks clients and the services they receive.

When Christine Butchko began working as a case manager for a nonprofit mental health organization in central Pennsylvania, she had 40 mentally retarded individuals in her caseload and no systematic way to keep track of them. Each time she visited one of her charges, Butchko had to fill out forms by hand, detailing whether this person was receiving the services he needed or whether there was any change in the medications he took. Carbon copies were stashed in a metal filing cabinet in another part of the Dauphin County office where they might go untouched for months.

If a form was inadvertently stuck in the wrong file, it would be lost forever. Because Butchko (along with most of the case managers who are contracted by the state's Office of Mental Retardation, OMR) did not have easy access to files, tracking clients' progress was difficult, and identifying patterns of abuse, neglect and illness was all but impossible.

And indeed, when the Pennsylvania auditor general's office investigated allegations of abuse in 1999, it uncovered substandard care in a number of group homes for people with mental retardation, including some unexpected deaths, the unnecessary use of restraints, workers with criminal backgrounds, and generally unsanitary and unsafe conditions. Local news media jumped on the story.

The state's mental retardation system has come a long way since then. Today, Butchko has a PC on her desk, which she uses to enter her case notes into the Pennsylvania Department of Public Welfare's Home and Community Services Information System (HCSIS, pronounced hick-sys). HCSIS is a Web-based client information management system that integrates with the claims processing system for the entire public welfare department and tracks individuals in its care. The system helps Butchko and other case managers stay on top of their cases and more easily assess the progress of their charges. In addition, all service providers are linked to the system in order to register incidents such as medication errors, emergency room visits, deaths, illnesses and abuse. And consumers use HCSIS's Web-based directory to apply for services online and to choose providers that offer the specialized therapies, transportation, respite care, family support, day programs and job training they need.

Because of this new system, the state now knows who's enrolled in the system, what services they're getting and what it all costs. Pennsylvania's Department of Public Welfare (DPW) has been able to analyze incidents such as medication errors, illness, death, emergency room visits and abuse, and take measures to prevent them. And indeed, since 2002, the number of such incidents in the state system has decreased by 36 percent, and the use of restraints has plummeted by 74 percent. HCSIS has also helped the state to reduce costs, and it has improved productivity. The state has saved $US54 million by building a single system that all 46 county mental retardation programs can use.

Pennsylvania's DPW is now a role model for other states looking to transform their public welfare systems. Massachusetts and Delaware are building similar systems using Pennsylvania's source code, and 17 other states have expressed interest in using the system. Steve Eidelman, executive director of The Arc, a nonprofit advocacy organization for people with mental retardation, says no other state has an information system as comprehensive as Pennsylvania's.

"Most states can't tell you who's getting what [services], who needs what, what it costs, whether it's working," Eidelman says. HCSIS "puts in place a whole new level of accountability for dollars and for outcomes. It allows people in government and in the advocacy community to make statements about what's going on in a way we've never been able to do before."

Pennsylvania's system was honoured with a Grand Enterprise Value Award from CIO (US) this year because it has made a major difference in quality of life for people with mental retardation. "DPW has taken a huge risk in the way they're organized and operate," says Gregor Bailar, CIO of Capital One and an Enterprise Value Awards judge. "They're focusing on people having a better life rather than just moving them through the system."

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