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Communications of the ACM
Empowering Persons with Disabilities with Decision-Support Technology
Many people with disabilities fear they will lose essential benefits if they go to work [5]. Indeed, programs such as Housing Rent Supplements, Supplemental Security Income (Title XVI), Disability Insurance (Title II), Medicaid, Medicare, Food Stamps, and Temporary Assistance to Needy Families have associated benefits that disappear or are significantly reduced when a beneficiary's income or resources rise beyond thresholds that are difficult to predict. Benefit program policies are extremely complex and interact with each other. Moreover, they are administered by multiple agencies, each of whom has personnel available to help beneficiaries make employment-related decisions.
Unfortunately, personnel are often unaware of or misunderstand the interpolicy issues that exist. Beneficiaries are forced to deal with multiple experts who do not coordinate with each other. In light of this confusing and complex decision-making environment, many beneficiaries are fearful of pursuing greater economic self-sufficiency and, instead, often choose the perceived security of relying on minimal government subsidies.
Such realities are reflected in recent data released by the U.S. Social Security Administration (SSA). Nearly 8.5 million working-age citizens receive Supplemental Security Income (SSI) and/or Social Security Disability Income (SSDI). Approximately 9% of 1864-year-old SSI recipients receive earnings and 55% of those working make under $200 a month [4]. These numbers are disturbing, given recent reports that many unemployed people with disabilities desire to work [3]. Further, recent research has shown that even people with the most severe disabilities can work when given appropriate support and accommodations, and when their motivation to work is not muted by fear [1, 2].
WorkWORLD Decision Support
In response to difficulties associated with transitioning people with disabilities to work, the Employment Support Institute (ESI) at Virginia Commonwealth University, through funding from the SSA and others, designed and developed the WorkWORLD Decision-Support System. The goal of this system is to help people with disabilities find employment-based solutions to achieve higher net income through the best use of federal and state work incentives and benefits. WorkWORLD considers the interaction of income, benefit programs, and work incentives, and provides expert advice to help a person discover employment-based solutions to matters of income and to better manage their benefits. WorkWORLD is designed to be used by computer-literate people with disabilities and by employment counselors, benefits counselors, and other advocates for people with disabilities who want to work.
WorkWORLD is a stand-alone PC application and is implemented in Visual Basic 6 with a Jet Engine back-end and will run on Win98, WinNT, Win2000, and WinXP platforms. It has text-to-speech accessibility enhancements so vision-impaired users and others who prefer audio navigation can use the software.
WorkWORLD's interface is split into inputs and results (see Figure 1). Within the input area, users are asked a series of questions specific to their current situation. The questions include age, marital status, state of residence, information about benefits currently received, and financial information such as earned and unearned income. There are currently over 630 questions stored in the WorkWORLD database that are used to elicit information required to process the rules and policies associated with three major federal programs (SSI/SSDI, food stamps, and housing). Users are asked only those questions relevant to their situation. A forward-chaining inference engine evaluates question display rules to determine which question should be displayed next. As each one appears, context-specific help about the question or information about possible answers becomes available.
Once all the questions have been answered, a set of results are generated that appear in numerical, graphic, and textual formats, and are organized as they pertain to SSI/SSDI, food stamp, and housing programs.
Text results provide the user with expert knowledge about the modeled situation. There are three different types of text results available: A recommendation suggests trying a particular work incentive to see what effect it has on the user's situation; an alert informs the user of action that must be taken because the modeled situation may have undesirable consequences; and a note provides a user with general knowledge about their particular situation.
The numerical results show benefits received, earned and unearned income, and expenses in tabular form for each situation. WorkWORLD will also calculate net income for a particular program. The numerical results can also be viewed in a variety of income and expense graphs for greater understanding.
Figure 1 shows the WorkWORLD interface after a current situation has been entered for a beneficiary named Mike. Mike has a disability, lives independently, has a part-time low-paying job, and currently receives a SSI payment. The WorkWORLD calculation engine generates a recommendation suggesting that Mike try using a Plan for Achieving Self Support (PASS) to pay for expenses incurred in preparing for more remunerative employment. The software will dynamically calculate the maximum value of the PASS that would be 100% reimbursed by an increase in the benefit check (an amount based on Mike's earned income, unearned income, and other work incentives he may be receiving). That calculated value is embedded inside the recommendation's text and is prevalent throughout many of SSI/SSDI, housing, and food stamp recommendations.
If users are unfamiliar with a PASS or require information on how to model the recommendation using the software, they can click on the hyperlink within the recommendation text result to access the "PASS Possibilities" help topic from the Help Information Systemthe most complete, publicly available integrated repository of information on disability-related policies and work incentives. The help system currently includes 3,207 topics, 16,769 hyperlinks, and 7,019 keywords; it is accessed regularly by federal and state government employees when they need detailed information about policies and incentives.
Users can choose to make changes from their current situation to test future what-if scenarios. In our example, a user may want to see the effect of the PASS recommendation on Mike's situation. The change is entered as a new situation based on the original entry. This creates a new column (situation) in the input and output sections allowing for easy comparison between multiple situations. When a new situation is created, the user has the option of basing it on any of the existing modeled situations. The base situation's answers are automatically copied into the new situation. Only the changed items require entry and benefit and income changes compute automatically.
The PASS in the example is used to pay for computer training and for transportation costs to get to the training (totaling $257.50 per month). This training will allow Mike to increase his skills and subsequently pursue more ambitious job opportunities.
Figure 2 shows the WorkWORLD interface after two subsequent situations have been entered. After modeling the PASS situation, WorkWORLD recommends the user see what happens when Mike earns more money. The user creates a new situation where Mike earns $1,200 per month (which is realistic given the training he received using the PASS) and must pay $100 in commuting expenses. Based on this situation, WorkWORLD alerts the user that Mike will lose his Medicaid benefits unless he can prove he needs Medicaid to work. By clicking on the "Keeping Medicaid" hyperlink inside the alert, the help system provides detailed instructions on how to "demonstrate to the SSA that Medicaid is required to work." WorkWORLD again informs the user that Mike qualifies for a PASS, and also recommends the option of using a Impairment-Related Work Expense (IRWE) work incentive. An IRWE can be used to pay for up to 50% of items or services that are necessary for a person to work. The user models one more situation that uses a $100 IRWE for Mike's commuting expenses.
Recent research has shown that even people with the most severe disabilities can work when given appropriate support and accommodations, and when their motivation to work is not muted by fear.
Figure 3 shows a summary of the SSI/SSDI numerical results after all four situations have been modeled.
In Situation 1 (SSI low-paying job), Mike is earning $600 per month and receives a SSI check of $294.50. In Situation 2, Mike has $257.50 in employability investments (modeled as a PASS). This amount gets added to his SSI check and is subsequently spent on training. Mike has the same net income as in the previous situation, but he is getting training in computer usage. In Situation 3 (better job), Mike takes a new job that earns $1,200 per month, has $100 in travel expenses; his net income increases to $1,100 per month. He no longer receives a SSI check because his countable earnings exceed a threshold limit that determines eligibility. Finally, in Situation 4, Mike uses an IRWE to pay for commuting expenses, which, in turn, reduces Mike's countable earnings; he now receives a small SSI check of $44.50 and his monthly net income increases to $1,144.50.
This simple example demonstrates some of the functionality of the WorkWORLD software. More complex situations taking into consideration many more factors and programs are modeled regularly by users of the software.
Who is Using WorkWORLD?
The WorkWORLD software has been requested by users from every U.S. state as well as from Australia, Canada, Indonesia, Ireland, Malaysia, People's Republic of China, and Portugal. Approximately 200 unique users request the software every month.
WorkWORLD is being adopted at institutional levels in several states. Employees in Georgia, Virginia, Delaware, South Carolina, North Carolina, Oklahoma, Iowa, Pennsylvania, California, Nevada, Colorado, New Jersey, Tennessee, Louisiana, Massachusetts, South Dakota, and Missouri have been formally trained on the software.
The North Carolina Division of Rehabilitation Services started using WorkWORLD to help improve services to recipients of SSI and SSDI. Benefits counselors use WorkWORLD to model and discuss a variety of short- and long-term alternatives for the consumer. WorkWORLD has been used for over 400 individuals often leading to approved work-incentive usage, detection of over- and underpayments, and better interagency coordination of services. The system has detected current or future over- or underpayments in approximately 30% of individual's current situations.
The Massachusetts Benefits Planning, Assistance and Outreach Grant (BPAO), entitled Project IMPACT, uses WorkWORLD to develop benefit plans for consumers. IMPACT uses community organizations to bring the planning service to its customers; its goal is to increase the understanding and use of work incentives to minority-focused organizations in their respective communities. To date, over 520 benefits plans using WorkWORLD have been generated. Reports from BPAO representatives indicate that through WorkWORLD they are better able to articulate to their consumers how they can improve their quality of life by increasing their net income, gaining skills, and achieving greater control over their lives.
Conclusion
The purpose of WorkWORLD is to empower individual beneficiaries so they can make better decisions related to their employment possibilities, and better utilize the benefits and work incentives available to them. To reach and influence the maximum number of beneficiaries requires software that contains content relevant to each person's situation. To this extent, ESI has partnered with a number of states including Massachusetts, Delaware, South Dakota, Iowa, Virginia, Oklahoma, South Carolina, and Georgia to deliver customized state content within WorkWORLD in addition to the federally implemented information that is already part of the system. State content can include the integration of state information within the Help Information System, and subsequently the addition of state-based questions and associated calculations into the main WorkWORLD program. ESI plans to incorporate customized information into WorkWORLD for each state, which will result in a comprehensive system reflecting both federal- and state-level, disability-related policies serving most working-age adults in SSA's disability population. Finally, ESI is beginning the process of reengineering the software in preparation to deliver WorkWORLD content and calculations over the Web.
References
1. Gilmore, D., Bose, J., and Hart, D. Postsecondary education as a critical step toward meaningful employment: Vocational rehabilitation's role. Research to Practice. 7, 4 (July 2001); www.communityinclusion.org/publications/text/rp29.html.
2. Hill, M., Wehman, P., Kregel, J., Banks, D., and Metzler, M. Employment outcomes for people with moderate and severe disabilities: An eight-year longitudinal analysis of supported competitive employment. J. Association for Persons with Severe Handicaps 12, 3 (1987), 182199.
3. National Organization on Disability. Louis Harris Survey of Americans with Disabilities. (2000).
4. Social Security Administration Office of Research, Evaluation and Statistics Division of SSI Statistics and Analysis. SSI disabled recipients who work. September Quarterly Reports (19952003).
5. Sowell, C. Hardly working. Quest 6, 4 (1999); www.mdausa.org/publications/Quest/q64working.html.
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