Disability Benefits 101 — Today’s Portal to the Possible Real-Time Information Supports Employment, Saves Time for Many

By Byron McDonald, Program Director of WID's Employment and Disability Benefits Initiative

The Challenge

Current employment rates and economic conditions for Americans with disabilities are grim, and getting worse. This trend is especially troubling when considering youth with disabilities. During March 2011, the Bureau of Labor Statistics reported the employment rate for youth with disabilities ages 16 to 19 to be 11.6 percent compared to 24.7 percent for same aged youth with no disabilities. Youth with disabilities ages 20 to 24 had an employment rate of 31.4 percent. The employment rate for youth ages 20 to 24 with no disabilities was 61.0 percent for March 2011. Regarding individuals with disabilities overall… “In May 2011, the percentage of people with disabilities in the labor force was 21.1. By comparison, the percentage of persons with no disability in the labor force was 69.7. The unemployment rate for those with disabilities was 15.6 percent, compared with 8.5 percent for persons with no disability, not seasonally adjusted” (U.S. Bureau of Labor Statistics).

Recent Research Prompts Rethinking Work, Disability and How to Provide Employment Supports

The Center for Economic and Policy Research outlined the challenge in more detail in 2009: “Almost half of working-age adults who experience income poverty for at least a 12-month period have one or more disabilities. People with disabilities are much more likely to experience various forms of material hardship—including food insecurity, not getting needed medical or dental care, and not being able to pay rent, mortgage and utility bills—than people without disabilities, even after controlling for income and other characteristics. Measures of income poverty that fail to take disability into account likely underestimate the income people with disabilities need to meet basic needs” (Half in Ten, Why Taking Disability into Account is Essential to Reducing Income Poverty and Expanding Economic Inclusion, September 2009).

Almost 12 million Americans today receive Social Security disability benefits, according to recent Social Security Administration (SSA) data. Most receive cash benefits and attendant health coverage from the Supplemental Security Income program (SSI, in most states along with Medicaid) and/or the Social Security Disability Insurance program (SSDI, with attendant Medicare after two years of SSDI cash benefits).

A longitudinal review of this growing group, from 2004 through 2007, reveals that it contains a subset that is actively pursuing work-focused activities. In tracking earnings data from 2004 to 2007 and relating it to Social Security’s National Beneficiary Survey data, Mathematica Policy Research, Inc. (MPR) found that 40 percent of current SSA disability beneficiaries (about 4.4 million individuals) are work-oriented. MPR research finds that this work-oriented subset has goals of getting a job, moving up in a job, or learning new job skills. Individuals in the subset see themselves in paid work over the next five years. Of this group, 21 percent had earnings in all four years. The 21 percent subset represents 890,000 Social Security disability beneficiaries who have had earnings for four years in a row (Livermore, Gina, Work-Oriented Social Security Disability Beneficiaries: Characteristics and Employment-Related Activities, Mathematica Policy Research, December 2009).

The Employment and Disability Benefits Initiative—Addressing the Challenge

The California-based World Institute on Disability (WID) works to eliminate barriers to full social integration and to increase employment, economic security and health care for persons with disabilities. WID has been addressing the information needs of job seekers with disabilities since 2000 with development of its Employment and Disability Benefits Initiative. Disability Benefits 101 (DB101) is part of this Initiative.

DB101 presumes there are large numbers of people with significant disabilities with expectations to work, with plans to work and who are seeking to make informed decisions about work. At the same time, there can be complex interactions between employment and receipt of disability benefits, publicly funded health coverage, and other government benefits. Additionally, the “work incentives” within disability programs are often confusing to individuals. In response to these challenges, DB101 posits that success at work can happen for more people with disabilities through wider and consistent access to objective, real-time information about work and each person’s benefit program interactions.

Disability Benefits 101: Overview of Current Services and State Partners

Today, residents in California, Michigan, Minnesota and New Jersey access DB101 as an introductory portal to using public and private, state and federal benefits to support viable, long-term transitions to employment. Arizona’s DB101 portal is in design and production phases this year and will be launched to the public in early 2012.

DB101 (access to each state-specific site is available at www.db101.org) provides users with a learning environment that has information about benefits programs and tools to deliver individualized estimates regarding work and benefits based on data entered by the user. In this way, DB101 offers both information and tools on benefits, health coverage and employment to help users plan ahead and learn how work and benefits can go together.

The California DB101 web site, public since 2004, averages more than 35,000 visitors each month. Several thousand people have used California’s Benefits Planning Calculators with an average completion rate of 63 percent.

DB101’s tools and content areas also refer users to logical “next steps”— especially one-on-one benefits and employment planning and counseling services. For example, community work incentives coordinators—funded by Social Security’s Work Incentives, Planning and Assistance grants—can use DB101 to demonstrate the effects of work on Social Security benefits with their clients.

How DB101 Got Off the Ground

In 2000, WID conducted a California-wide needs assessment on work-related direct services for California residents with disabilities. DB101 (www.db101.org) was born out of that statewide survey with resources from a major startup grant from The California Endowment. The California Department of Rehabilitation also provided startup grants.

The most popular recommendation in the needs assessment was for a “one stop” online portal where people with disabilities could directly access plain-language information about work and a range of benefits and health coverage programs. The problem most cited in the survey was the experience of getting wildly different answers to the same benefits question depending on which service provider the person contacted.

WID spent a year and a half designing the first launch of the California DB101.During this time, California received a Medicaid Infrastructure Grant (MIG) from the Centers for Medicare and Medicaid Services to support and promote employment of people with disabilities (the California Health Incentives Improvement Project). WID launched the first state version of DB101 for California residents with disabilities with early and ongoing MIG support. Seven years later, DB101 provides online services in four states with a fifth, Arizona, in the production phases for public launch in 2012.

“Assisting someone just to get that person to their very own set of questions about their life and the benefits they rely on can be an achievement,” says Mason O’Neal on the DB101 staff at WID. He adds: “People learn about public benefits and then about their work rules in all kinds of uneven ways; many just pick up on the urban myths, not the facts or rules that can work for their particular situation. Others don’t want to talk to anyone about their benefits and paid work out of sheer fear the benefits will get pulled out from underneath their new-found stability, for example being able to share the rent for a small apartment.”

DB101’s objective is to help individuals with disabilities realize that there are pathways to employment. WID and its state partners believe that DB101 can support people in building the confidence to make job decisions and to take calculated risks. Its online tools can also inform conversations between job seekers and those they trust such as family members, peer mentors and local service providers.

Years of focus groups, usability tests and design meetings with state partners have led to success creating portals that are intuitive and easy to navigate for a wide range of people. The DB101 Core Team, led by WID, and including ECONorthwest (calculation engine builders) and web consultants Eightfold Way, continue to refine DB101’s benefits planning information and calculator tools. There are also long-term economies of scale with DB101 services. One set of servers and user interfaces, with an integrated content management system, supports the multi-state services.

State Adaptation

A hallmark of DB101 is adaptability. DB101 services are “living projects”—works in progress built on ongoing communication and consensus decision-making with the state agencies and stakeholders that use the online services. Minnesota DB101 has a high level of interaction and engagement inside state government, with a chat line and phone access available to the state’s Disability Linkage Line. The Linkage Line can connect individuals to a DB101 expert for users who have questions or need assistance. The Arizona DB101 project is a partnership with the state’s Medicaid agency and state Rehabilitation Services. After launch in 2012, Arizona vocational rehabilitation counselors will use DB101 tools in their service delivery when counseling those who use public benefits. Arizona, California and Minnesota have, or will have, a full menu of content articles along with the online calculator tools. DB101 online services also exceed all federal standards for screen reader accessibility.

The key leadership and resources across the current DB101 states have come from each state’s Medicaid Infrastructure Grant project. While the MIG program is winding down, MIG project directors and their staff led the way to adapt DB101 services to their states in ways that suit each state’s infrastructure-building, and to better serve employment outcomes of state residents who use Medicaid and other public benefits. By design, the MIG and other state partners project that DB101 online services will remain public, free and available as maintained services even after the MIG program ends.

This article was originally published in the August 2011 issue of Policy & Practice. Reprinted with permission from the American Public Human Services Association (www.aphsa.org). All rights reserved.