Saturday, August 8, 2015

Exploring an Alternative Definition of Disability

Here is the speech I gave on Aug.4,2015 at the Committee for a Responsible Federal Budget's Conference on SSDI Proposal Initiative.

Exploring an Alternative Definition of Disability

On behalf of my co-writers, Barbara Butz, Anita Aaron, Aya Aghabi, and myself, thank you for considering our paper re “ Exploring an Alternative Definition of Disability “. I want to start by telling you a little about me because I think it's relevant to our paper.

In 2008, after 29 years of working for Wells Fargo as a disabled IT professional, I retired as a Sr. Vice President to start a disability-focused employment company that specializes in consulting on staffing and placement issues. While at Wells Fargo, the project I was most proud of was the one where I designed and was responsible for the first 7 by 24 online banking system in the United States.

My disability has always been very visible. I use a powered wheelchair. My speech has always been impaired. I use Personal Assistant Services for many of my activities of daily living. In the 70's, shortly after starting work, I received a letter from Social Security telling me I was no longer disabled. My friends quickly reassured me that I need not go through an identity crisis. My Cerebral Palsy remained intact. It took me over 5 years to earn as much working as when I received government benefits. If I had needed as much assistance then as I do now, I could not have afforded to have gone to work.

Changing the Social Security definition of disability is not a new idea. Our research revealed that in the 1950's the founders of the Social Security Disability Program wrestled with the definition. The wrestling has continued for 6 decades! In 2006, the Social Security Advisory Board emphatically recommended the definition be changed.

We suggest the new definition be, “A disability is a medically determinable physical or mental impairment(s) that has resulted in a substantial impediment to employment and is expected to result in death or has lasted or is expected to last for a continuous period of at least 12 months.”

This definition is very similar to the current definition, except there is no reference to the ability or inability to earn above the Substantial Gainful Activity (S G A) amount. With this new definition, the Social Security Disability Program can and should restructure itself. The restructured disability program should enable and encourage people with disabilities to seek assistance to stay at work as soon as impediments to employment due to disability appear. Hopefully, the concept of 'going out on disability' will be eliminated. The newly structured Social Security Disability Program should put focus on Coordinated Employment Services and must be much simpler to navigate than today's program.

This definition will enable Social Security to set up a 2 phase approach. Phase 1 enables beneficiaries to receive support services. People with disabilities should be eligible for phase 1 if they have the required number of Social Security work credits and if they have a disability as newly defined, and as soon as their disability imposes impediments to their employment. Phase 1 beneficiaries receive health care services and Coordinated Employment Services as needed. People remain eligible for phase 1 support services until they reach retirement age, or are no longer disabled, or no longer need or want support services, or die.

Phase 2 enables beneficiaries to receive cash benefits. To be eligible for phase 2, people with disabilities must be eligible for phase 1. To begin receiving cash benefits, and to avoid induced entry, applicants should be expected to earn below a given wage for a given amount of time. These cash benefits should be viewed as offsets to the high cost of disability. Our paper refers to studies documenting that the cost of disability is high. You can also take it from me. Having a disability is expensive! We recognize the need for an upper earnings limit above which beneficiaries should be able to pay their own expenses. We suggest S S D I beneficiaries keep their full cash benefit until their total earnings plus stipend exceed 250% of the federal poverty level. After reaching that earning level, stipends will be reduced by $1 for every $3 earned. Earnings will be reevaluated annually. Participants experiencing intermittent unemployment can request earnings re-evaluations more frequently.

The emphasis of the restructured S S D I program should be on providing Coordinated Employment Services. Professional career coaches should work with beneficiaries to create, monitor and maintain their Individualized Career Plan (I C P). I C P's should clearly outline tasks to be accomplished to stay-at-work or return to work. Tasks may include;
     Completing a rehabilitation program.
     Finishing a school, training or retraining program.
     Assessing and modifying the workplace environment.
     Obtaining benefit and financial planning services. 
     Acquiring self-employment and business start-up services.

There are many employment services available to people with disabilities today. We are not suggesting new services need to be developed. Today however, there is a very complex, complicated maze that people with disabilities must go through to find, qualify for, and take advantage of these services. There is a dire need for beneficiaries to work with career coaches to coordinate services.

Social Security should take the lead and fund the full development and piloting of the restructured program including Coordinated Employment Services. Social Security should administer Coordinated Employment Services outsourcing the work to local agencies. Social Security should also evaluate the effectiveness of pilots and modify the program as needed.

In the development stage, a complete definition of Coordinated Employment Services as well as the roles and responsibilities of career coaches must be agreed upon. How Individualized Career Plans will be created, monitored and maintained must also be decided. Consensus and cooperation from affected government agencies, the vocational rehabilitation community, the disability advocacy community and the employer community must be obtained. In the development stage, federal waivers must be obtained and a cost benefit analysis must be conducted. This analysis must determine what percent of beneficiaries must stay-at-work/return to work to ensure the program will be financially sustainable. The program should be piloted in 3 to 5 states. A complete evaluation should occur after the first 5 years and every three years thereafter. The program should be modified as lessons are learned from the evaluations.

Here are some questions we receive most often. Will the proposed new Social Security definition of disability fix the near term S S D I financial problem? No. How will beneficiaries who can't work be affected? They should experience no difference from today. Why now? 25 years after A D A, there has been no significant employment improvement for people with disabilities. Every program, like every business, must periodically reinvent itself. The time for innovative change is now. Why will this work? We propose setting measurable attainable employment goals based on consensus from affected communities and a cost benefit analysis and pilot the program to determine the feasibility of reaching the goals.

One of the most important things I've learned in my professional career and from being a person with a disability is that if you don't start, you will certainly never succeed, and you must always Go Go Go!!