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."

A System in Crisis

HCSIS was hardly a quick or painless achievement. It was in the disastrous aftermath of deinstitutionalization that Pennsylvania state officials realized they would have to overhaul the way they cared for mentally disadvantaged citizens. The nationwide push in the 1980s to shut down state-run mental health and mental retardation facilities and integrate former residents into the community had two motivations: cutting cost and improving patient care. But many US states, including Pennsylvania, developed community programs without giving much thought to infrastructure, enrolment practices, eligibility or any kind of quality management. They were unprepared for the number of people who needed social services and housing. Because states lacked social workers, programs and funding, many mentally retarded and mentally ill patients didn't get the services they needed and ended up homeless.

For those citizens who were in group homes, the situation wasn't much better. As the 1999 audit illustrated, there were numerous instances of abuse and neglect. Not surprisingly, a federal Centres for Medicaid and Medicare Services (CMS) audit revealed that the public welfare department lacked standard management practices and monitoring procedures. It also found that DPW didn't give its developmentally disabled consumers enough choice regarding their care. Individuals and their families had little say in what services they received and no say in selecting a provider. They received services based on which providers had space available, says Patty McCool, program manager for the Office of Mental Retardation's central Pennsylvania region. The federal audit concluded that OMR needed to do more to support self-determination among its clients, enabling them to live more independently.

CMS's conclusions didn't come as a complete shock. Two years prior, OMR and about 70 of its stakeholders (individuals, families, case managers, county mental retardation office employees, provider agencies and advocates) had embarked on developing a plan to improve the quality of care provided to people with mental retardation and to give them and their families more control over the services available to them. OMR officials realized that the key to accomplishing this plan was to provide easily accessible data about the services it and its contractors provided, and about the individuals enrolled in the state mental retardation system.

The problem was they didn't have it.

Once a year, OMR collected information from its 46 county mental health and mental retardation programs across the state. The data was filtered into a hodgepodge of databases that didn't connect well and "didn't collectively produce the kind of information that was necessary to manage what was then a $US1 billion program", says Gary Rossman, director of OMR's office of information management and project manager for HCSIS.

OMR realized it needed to build an integrated data collection system for this purpose. But first the agency had to figure out how to give individuals and families greater say in the care they received. So OMR officials embarked on a series of regional forums to get feedback from the clients themselves and their families and advocates. From these forums, OMR learned that it had to fundamentally change the way it operated. For instance, family members of citizens with mental retardation complained about OMR's inconvenient Monday-Friday, 8.30am to 5pm office hours. If they wanted to get job training for a relative, they had to leave their jobs to go to the OMR office to fill out an application. They also complained about the long waiting lists for services. In addition, clients and family members were tired of case managers and providers who focused on their - or their relatives' - deficiencies rather than their needs and desires.

These regional forums set the stage for a nine-month review of OMR's business processes, during which everything from registration and enrolment practices to billing for services was evaluated. With the requirements for its new business processes in hand, in September 1999, OMR officials approached the budget office of Gov. Tom Ridge with a proposal for funding an enterprisewide information system. They won approval from the budget office to begin development of the system at an estimated cost of between $US35 million and $US40 million. (The total cost of the system since 1999 has been $US50 million.)

A Star Is Born

OMR originally intended just to develop the functional and technical requirements for a system that it would turn over to the 46 counties to build. The counties initially favoured the decentralized approach, but as they realized the scope of the information system, their tone changed. Early in 2000, they no longer wanted to build their own systems because they didn't have the necessary staff or the money, says Rossman.

In the spring of 2000, OMR began developing a proof-of-concept for a centralized, Web-based, customer-centric information system. Shortly thereafter, DPW officials decided that the system OMR was developing for itself should be made into an enterprisewide system that would serve as the data collection system for all of the home- and community-based services throughout DPW. The office decided to build the system from scratch because no vendor provided a solution comprehensive enough for its needs. Thus, HCSIS was born. During the next budget cycle, DPW returned to the governor's budget office to ask for more money since the scope of the project had expanded. They got it.

From the beginning, the governance team - which included DPW secretary Feather Houston, then OMR deputy secretary Nancy Thaler, then DPW CIO Charles Gerhards, Rossman and the project team - met frequently to oversee and coordinate the development of the ambitious project. In the process, they identified applications and systems in other areas of DPW, such as the Medicaid claims processing system and an online application for services, that the project team could leverage to build functionality into the system. Instead of having to build similar applications from scratch, the project team built interfaces between HCSIS and those systems so that the new system could work with them seamlessly.

Rossman says the governance team's oversight was invaluable in preventing the project team from duplicating effort and spending money unnecessarily. To get such a complex system in place, the 100-person project team, led by Rossman, developed a phased implementation strategy for each of the system's four modules. The modules include quality management, which included an electronic customer satisfaction survey and health risk profiles for individuals enrolled in the state mental retardation system; supports coordination, which contains the online services and support directory, and individual service plans maintained by case managers; financials, which handles budgeting and allocating funds to counties, service utilization and claims processing; and executive reporting, which aggregates data and produces detailed reports on the 11 state and federal programs supported by HCSIS.

The project team deployed one module at a time, starting with quality management. First they rolled out the customer satisfaction surveys, then the incident management system and finally the health risk profiles. They piloted a component of the module within a handful of counties, took each component offline after each pilot to incorporate feedback from users, and did further testing until they finally rolled out each component statewide. This implementation strategy was designed to convince the remaining sceptics in the governor's budget office that the new system wasn't going to be a boondoggle. Rossman says the phased implementation strategy enabled the project team to stay on top of a deployment that affected 80,000 citizens and 46 counties.

Once the quality management module was implemented in February 2002, the project team proceeded to install the supports coordination module - the system that has made life so much easier for case manager Butchko. The team piloted the supports coordination module for three months in four counties. They made changes to the system (such as killing bugs, expanding the size of comment fields on monitoring forms and service plans, changing workflows, and relaxing some of the controls for changing eligibility dates), then rolled it out to the rest of the state.

When the supports coordination module went live to 1500 supports coordinators in January 2003, the counties celebrated the accomplishment with informal office parties. OMR program manager McCool baked cookies and cakes, and gave out pens with light-up smiley faces on the caps. Ever appropriate, IT handed out magnets with the HCSIS help desk number.

The Results Roll In

Once these two modules were in place, OMR officials could suddenly see patterns in the care being provided to their clients. Before HCSIS, there was no easy way to monitor incidents. Reviewing 100 incident reports, categorizing the incidents and entering the information into a spreadsheet for analysis could take three days, says McCool.

When the system first started producing satisfaction surveys and quality reports, OMR noticed unusually high numbers of medication errors and alerted the counties. "One county worked with its providers to set up a different method for getting medication from local pharmacies so that they wouldn't run out of medication and people wouldn't miss doses," says McCool.

Since 2002, the total number of abuse or neglect incidents has decreased by 36 percent. And the use of restraints is down by 74 percent. One of HCSIS's first quality management reports also revealed that individuals with mental retardation didn't have much say in where they wanted to live. Armed with this information, DPW officials encouraged case managers, service providers and families to be more aware of the need to empower developmentally disabled citizens to make their own life choices. The number of individuals choosing where they want to live has shot up 30 percent since the system was deployed. The number of individuals with keys to their own homes increased by 7 percent from 2001.

HCSIS provides DPW officials with the data they need to hold providers accountable for preserving the dignity and rights of individuals with mental retardation. When DPW officials identify a trend, such as the high percentage of group home residents who reported that group home staff entered their rooms without first knocking, they bring it to providers' attention and measure providers against their ability to correct it. Since DPW published that stat about bedroom privacy, group home staff now knock on a resident's bedroom door and wait for a response before walking in 70 percent of the time, according to a recent satisfaction survey.

While pieces of both the financial and executive reporting modules are in place, DPW continues to tweak them. Rossman says a dashboard for monitoring claims processing was added to the executive reporting module in 2004. And the financial module continues to undergo changes as the DPW shifts from a provider-focused to customer-centric organization. Currently, for instance, the state is piloting a new model for disbursing Medicaid funds. Historically, the state disbursed those funds to each of its 46 counties, which then contracted with agencies to provide services such as job training, day programs and a range of therapies. Counties would give the agencies a lump sum, say $US100,000, according to what it cost them to provide services. And with that money, the agency had to serve, say, 100 people in 1000 days. If the provider didn't serve all 100 people, they'd still keep whatever cash remained, McCool says, because it went toward their operations. With the new model, counties will pay agencies only for the units of service they provide, whether those units be per hour or per day.

In the meantime, the financial module is helping to curb tens of thousands of hours of manual labour by automating the process for verifying claims statewide. Providers now send their bills for service to their counties electronically through the Medicaid billing system. The billing system interfaces with the new system, where it checks the individual support plan to make sure that the services being billed were authorized and that the provider is billing at the correct rate. The authorization is then electronically sent to the county, which pays the provider. "In the past," says McCool, "the provider would send its bill to the county, and the county would have to check to make sure services were authorized manually." A process that used to take weeks now takes seconds.

When the financial and executive reporting modules are fully implemented, counties should be better able to whittle down their waiting lists for services because HCSIS will tell them who's waiting for what. Counties can then work with provider agencies to obtain the needed services.

"If we're ever going to switch from provider-driven ways of doing things to services being defined by the people who need them, we need data," says Arc's Eidelman. Pennsylvania is living proof that data really can make a difference in people's lives.

Critical Success Factors

» Involve a variety of stakeholders in the design and development of the system and maintain their engagement in the project.

» Use a phased implementation strategy to keep deployment manageable and achieve the quick wins needed to keep sceptics at the table.

» Win the cooperation of recalcitrant business partners by showing them what the system could do for them.

How to Market Change

Pennsylvania state officials sold provider agencies on the new system, emphasizing how it could help them market their services

Of all the stakeholders involved in the design of the Pennsylvania Department of Public Welfare's Home and Community Services Information System (HCSIS), the group most threatened by the new system were the provider agencies. After all, they had the least to gain from the changes and the most (in terms of revenue and autonomy) to lose. In fact, during one of the regional forums, a representative from one of the agencies that provides services to people with disabilities announced: "If we collect this information, we will be forced to do something about it. I recommend we not do it."

But these agencies were no longer the centre of the state agency's universe.

Giving mentally retarded individuals and their families more choice in what providers they use meant that the agencies suddenly had to compete with others for business. And since they were now being paid on a per unit basis for services they provided, smaller agencies were worried that the larger ones would eat them for lunch, says Gary Rossman, project manager for HCSIS.

Yet the Department of Public Welfare (DPW) had to be careful not to alienate the providers because it and its constituents depended on their services. To make HCSIS more palatable, Rossman says the agency showed providers how they could use HCSIS to market themselves. Registering with the Web-based system gave providers the opportunity to broadcast the services they offered, the cost of those services, the counties they served and the ratio of staff to individuals at their facilities.

After all, it was in the best interest of DPW's constituents to have as many providers as possible linked to the system.

Patty McCool, program manager for the Pennsylvania Office of Mental Retardation's central region, says these agencies are slowly but surely adjusting to the changes and becoming more innovative. In Cumberland County, for instance, parents of mentally retarded children got together with providers and told them they wanted different daytime activities for their children. Two providers put their heads together and created some new day services.

"That never would have happened before," McCool says. "Before, the providers' attitude was, These are the slots we have. Take it or leave it."