The End of the Paper Trail

By Brendan Babish

“It was ability that mattered, not disability, which is a word I’m not crazy about using.” – Marlee Matlin

Researchers at the School of Information Systems and Technology’s (SISAT) Kay Center for E-Health Research are setting out to create an environment in which those with the ability to work can readily do so. Their SmartWorks software program will make that process more efficient, potentially supporting tens of thousands of people with disabilities’ reentry to the workforce.

SmartWorks is web-based software created by the Kay Center’s Ben Schooley, Sue Feldman, and Susan Daniels, with additional assistance from SISAT students Nagla Alnosayan and Gary Richmond. The project’s goal is to develop and pilot test a web-based tool that will facilitate electronic recordkeeping and payment tracking for those assisting persons with disabilities with workforce reentry.

“Through our research what we’re able to do is build software tools to help people with disabilities find jobs, retain jobs, overcome the fear of losing their government benefits if they lose a job, and help them understand they are not cut off,” said Schooley, a research fellow at the Kay Center and SISAT alum.

While the word “disability” might conjure up images of people unable to contribute to society, many of the more prominent disabilities are actually chronic diseases, such as depression, arthritis, or asthma. This is why it is estimated that one in four of all 20-year-olds will become disabled at some point in their life before they turn 67.

“The idea of getting people with disabilities back to work is to help them financially, but it also makes a significant difference in their well-being,” said Schooley. “Many of these people want to be out and are able to be out; they want to contribute to society.”

“People with disabilities like to think about what they can do, not what they cannot do. Working is something they can do – they can contribute to a healthier society, both socially and economically,” said Feldman, who is assistant director of the Kay Center and a SISAT doctoral candidate. “Facilitating employment dispels some existing stereotypes about people with disabilities and their ‘abilities’ in the workforce. This in effect can go a long way toward increasing independence.”

While over 50 percent of those with disabilities have indicated they want to work, traditionally only around 1 percent of them actually held a job. This was largely due to the fear that they would lose all access to financial and health benefits (e.g., Medicaid). Additionally, a recent Harris Poll survey indicated that 40 percent of executives would hire someone with a disability if they knew how and where to find those with proper qualifications.

Thankfully, the Ticket to Work and Work Incentives Improvement Act of 1999 (TTW) allowed those with disabilities to maintain at least partial health and cash benefits while working. TTW also helped establish Employment Networks (EN): individuals or organizations that contract with SSA to provide the necessary services and support to disability beneficiaries that have found, or hope to find, work. EN caseworkers receive compensation when beneficiaries reach employment milestones, so they have an imperative financial incentive to see their clients succeed.

Although this legislation created pathways to employment for many, it has yet to reach its full potential. The2008 official evaluation of TTW conducted by Mathematica Policy Research and funded by SSA found that the program had “not yet substantially expanded the number of private providers [ENs] that serve beneficiaries.” This shortage is clearly reflected in California, where there are 100 ENs serving 1.13 million people with disabilities who have been cleared to work through TTW (nationwide, over 12 million tickets have been issued). The report went on to state that EN caseworkers found many of TTW’s administrative policies “cumbersome and not conducive to financial gain.”

In July 2008, after the release of the report, SSA took action. It created new guidelines to streamline payments to ENs and offered increased support and outreach. SSA also set an ambitious goal of increasing the number of ENs by 150 percent by 2013. The last remaining roadblock was the prevailing administrative burdens; namely, paperwork.

While excess paperwork has long caused problems, information technology has the potential to bring long-sought solutions. With the Kay Center’s focus on using IT to improve health and the lives of those with disabilities, their staff wasted no time reaching out to ENs.

In May 2009, with initial funding through Special Hope Foundation*, the first phase of the SmartWorks project commenced when Schooley and Feldman conducted their own study of ENs to understand how they operate and the bureaucratic impediments to their work. The 21 ENs surveyed – from California, New York, and Wisconsin – all enthusiastically agreed that a web-based portal like SmartWorks could increase efficiency and allow them to serve additional beneficiaries.

Soon afterward, state programs in New York and Wisconsin provided an additional $100,000 to further development; with additional support of $185,000 from the California Wellness Foundation**, a follow-up grant of $100,000 from the Special Hope Foundation, and a Medicaid Infrastructure Grant, SmartWorks is set to launch its Phase I pilot group with select ENs in four states (California, Massachusetts, New York, and Wisconsin) this April. This pilot phase will last six months, after which a second group of ENs in states that have provided additional funding (a list that already includes Arizona, Indiana, Louisiana, and Rhode Island) will make up Phase II.

By testing SmartWorks in individual states, Schooley and Feldman will have the opportunity to work closely with the caseworkers using their software and utilize their feedback to make the necessary adjustments and improvements during evaluation periods and before subsequent pilot phases.

“The way we develop these software tools is by interfacing with the people who are actually going to be using them, the caseworkers. And during the first pilot project of six months, we’re going to be getting constant feedback from users on what to improve, how to improve it, and what isn’t useful,” said Schooley. “We’re not just throwing software out there. It really is a beta test and very much a process.”

To get an idea of how beneficial SmartWorks could be for ENs, consider the current amount of paper shuffling that occurs when a beneficiary lands a job, yet still requires benefits. The EN must regularly provide evidence to SSA that their client is working. To do this the beneficiary must either send or fax their paystub to their caseworker. The caseworker then fills out several forms and faxes these, along with a copy of the paystub, to SSA. Even if the caseworker and beneficiary do everything correctly, the time it takes to complete and transmit this paperwork causes lag times in adjustments and payouts. But often, when there are missing documents or mistakes, caseworkers will not be notified for months, at which point they must search through their paper files for the correct document (assuming they still have it). In the meantime, this search delays the submission of current forms and claims.

SmartWorks would make many of the more routine business processes electronic. This will both greatly reduce the possibility for error as well as flag and correct mistakes in a timely fashion. ENs should also appreciate having their beneficiaries’ files stored electronically as opposed to in voluminous filing cabinets.

However, this example highlights only one of the nearly limitless services ENs provide their beneficiaries. These services are contingent on a number of factors, but most prominently on the nature of the disability. There are people who might not have a résumé or worked in 10 years, or they might just need a new pair of glasses or their wheelchair fixed. They might need a check-up from a doctor, physical rehabilitation, or additional vocational training. Each individual with a disability is assigned an EN to handle their individual needs, and the number of clients any caseworker can take on depends largely on paperwork.

One of the biggest misconceptions about people with disabilities is that they suffer from permanent afflictions. While this is true in many cases, often an individual on SSA disability is suffering from a temporary health problem. For example, individuals who undergo coronary bypass surgery can spend 12, 18, or 24 months recovering, during which they would likely go on disability. This person will probably want to return to work, but re-entering the workforce after such a long layoff can be challenging even in the best of economic times. The individual may need to retain partial disability benefits while working part-time, or they may need additional vocational training to catch up with changes in their field, or to change professions altogether.

“A lot can happen in two years,” said Feldman. “Imagine if a person had surgery before the recent economic downturn. There’s a very good chance they would need to work closely with their caseworker to get back into the workforce.”

To accommodate the various tasks of an EN, SmartWorks is made up of eight individual web-based modules that can accommodate nearly everything an EN does, from recordkeeping – such as beneficiary contact information – to communication and filings with SSA. Prior to each pilot phase, caseworkers will receive training.

SmartWorks also features online training and help features for future troubleshooting.

While SmartWorks has been designed to increase efficiency, this can be measured in several ways, all of which Schooley, Feldman, and their team will be looking at throughout their pilot phases. The immediate goal is to see additional ENs sign up, but ultimately researchers are hoping individual caseworkers will be able to manage more beneficiaries, and as a result more beneficiaries will obtain and retain jobs, and there will be an overall reported satisfaction with the new software system.

While it is impossible to know how many additional beneficiaries will be served through this widespread upgrading from pen, paper, and fax machine to SmartWorks, it could easily be in the tens of thousands – and that number will only increase with time. Many people don’t yet realize how information technology can improve health outcomes and the lives of those with disabilities, but the Kay Center – founded just five years ago with a generous grant from the Kay Family Foundation – is already realizing much of this tremendous potential.

“The policy issue SmartWorks addresses is at the core of the Kay Center mission,” said Tom Horan, a professor in SISAT and director of the Kay Center. “That is, how information technology be used to empower individuals and agencies so that those with disabilities can become gainfully employed. Such a result not only has positive consequences for those with disabilities, but also ends up saving tax dollars. It’s a great win-win.”

*The mission of the Special Hope Foundation is to promote the establishment of comprehensive health care for developmentally disabled adults designed to address their unique and fundamental needs.

**TCWF was created in 1992 as a private, independent foundation, TCWF’s mission is to improve the health of the people of California by making grants for health promotion, wellness education and disease prevention.