A Legacy of Making Work Work

April 26th, 2013 · No Comments · Blog, Featured Home Page Post

Allen Jensen

Allen Jensen 1937-2013

The disability policy and advocacy community lost a key champion this week with the passing of Allen Jensen. Allen’s rich body of work improved the lives and work ability for millions of Americans across the country.

Always proud of his Iowa heritage and Midwestern work ethic, Allen was quick to charm, and even quicker at taking all your money at the pool table. When it came to work, however, he was one of those guys who not only knew the history of disability policy, but also recognized all the ways you could fold any new legislation into something more productive to improve the lives of workers with disabilities. Allen shared this talent freely – he mentored and supported a bevy of colleagues across the country to impart this rich set of skills which stemmed from his hard work and extensive persistence.

For these and many other reasons, Allen’s passing creates a void that will not easily be filled.

Allen’s passing comes as a significant loss for someone like me and many other individuals with significant disabilities all of whom benefited greatly from his body of work.

Allen was one of the primary architects of the 1619 work incentive that operates in the Supplemental Security Income program, more commonly known as SSI. To me, SSI is the mother of all work incentives. It allows people to return to work and gradually earn their way off of cash benefits while maintaining eligibility for critical, comprehensive health coverage only available via Medicaid.

The construction of SSI is ingenious; it  guarantees your life is always better working than when not working. The 1619 provision of SSI, for example, ensures that those of us with extensive healthcare costs can continue to access coverage when working and paying taxes – avoiding the no-win choice between employment and healthcare.

After experiencing a spinal injury at 16 during wrestling practice, I became acutely aware of the impact access to comprehensive healthcare has on the ability to live independently. My parents had the best health insurance money could buy, but it was exhausted within a year and a half. This left me with only one option – Medicaid – to access long-term care health coverage.

Medicaid is historically the only option for individuals with significant disabilities like me to provide coverage for long-term care costs. The 1619 provision is what has allowed me to maintain highly competitive employment over the past 20 years. It gave me the ability to maintain a positive outlook through employment, develop a professional career, build a home, contribute to the economy, and eliminate reliance on other supports.

As someone who has worked in health policy my entire career, I know the impact state employment initiatives have had on people’s lives – as well as on taxpayers. These programs are designed to provide a path to self-sufficiency as opposed to a reliance on disability programs, vastly decreasing the costs of disability-related programs such as SSI and SSDI.

Yet these programs are often mischaracterized as the root cause of rising costs and high rates unemployment. What scares me the most is when we lose such an important advocate in the community. Despite new avenues to advocate and work with federal and state officials, we have very few individuals who have deep connections, expertise and longevity within the DC beltway the way Allen did.

Even more alarming is the current political environment where states are preparing to completely dismantle programs that were specifically intended to facilitate individuals transitioning from public support programs to their own autonomy through work. Medicaid buy-in programs  were started to save taxpayers money, not because it was the right thing to do in allowing individuals with disabilities to work competitively while maintaining their connection to their only access for health care coverage. They are programs to support self-sufficiency through employment, programs that make fiscal sense.

All of these programs had Allen’s signature written throughout them, assisting many across the country. Health care reform offers new options to innovate on delivery systems that promote and support employment as a path to self-sufficiency, which all takes political will With any hope, Allen’s passing will bring a new charge to the disability community, to pass the torch, and work together to promote policies that facilitate seamless transition to self-sufficiency through employment from many of the disaggregated support programs that have forced individuals into a life of poverty. In doing so, Allen’s initial commitment to this community would be fulfilled.

For this, I remain ever hopeful.

Joe Entwisle, Senior Health Policy Analyst
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