NewsMaker Interview: Diane Braunstein Nominated for Federal Employee Award for SSA Compassionate Allowance program That Speeds Decisions For Certain “Seriously and Terminally Ill Individuals”

Our next NewsMaker Interview is with Diane Braunstein, one of the finalists for the Federal Governments 2011 Citizen Services Award, whose work in the Social Security Administration will be of particular interest to those working in access to justice.  (Disclosure: My wife Joan and Diane are second cousins). (Link here)

Ms. Braunstein, now Associate Commissioner, Office of International Programs, at SSA is a finalist for her work to “create a fast-track system for terminally and seriously ill Americans to receive approval for Social Security disability benefits in days or weeks instead of months or years.”

As the website explains:

“Working with the National Institutes of Health (NIH) and patient advocacy groups, Braunstein and her colleagues held public hearings, carefully reviewed detailed medical information and initially came up with a list of 25 cancers and 25 rare diseases that would automatically qualify claimants for benefits. The program added 38 additional medical conditions to the list in 2010.
Braunstein’s team also developed an easy-to-use reference guide and a training program that significantly reduced errors formerly caused by caseworker subjectivity, helping speed the process and better serve those in need.”

To the Interview:

Richard Zorza:   First, congratulations.  This is obviously a project that has made a huge difference to many lives at a time of great crisis.  Can you tell us how the program works day to day?  What should an advocate who is assisting someone with a terminal disease do?

Diane Braunstein:  Richard, thank you for that lovely introduction. One of the best attributes of the Compassionate Allowance program is that it is transparent.  The named conditions that are Compassionate Allowances are accessible on the Social Security Administration’s public website at: http://www.socialsecurity.gov/compassionateallowances/conditions.htm

Also, the same information we provide to state disability examiners about the medical evidence required to confirm the condition and the disability listings used to allow a claim are accessible to the public.  For example with respect to Esophageal Cancer, the public, disability examiners and advocates can access the same information at: https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022155.  The program’s transparency ensures that people with disabilities and their advocates can quickly determine if they qualify for benefits under the program.

In terms of how the program operates, once a person files for disability benefits online or at a local Social Security office, we enter the application into a certified electronic folder.  Next, in the process of sending the electronic folder to a State’s Disability Determination Service (DDS) a computer program scans the application to search for the names of Compassionate Allowance condition. For each named condition, the computer program can also identify about 10 alternative names for the same disease.  Once identified as a Compassionate Allowance claim, the application receives expedited processing.

Richard Zorza:     Thanks, that certainly sounds like an improvement from before.  And what should an advocate do if the system seems to be gumming up, rather than moving?

Diane Braunstein:  The vast majority of Compassionate Allowance are approved at the DDSs within 14 days.  So far, there has not been a problem.   

Richard Zorza: Can you tell us where the initial idea came from?  And why and how the problem developed?

Diane Braunstein:  In 1985, Michael J. Astrue, now Commissioner of Social Security, and I worked in the same office.  At that time, his father received a diagnosis indicating that he had a malignant glioma.  In 1985, a diagnosis of a malignant glioma diagnosis meant that you had a rare and deadly form of brain cancer.  Mike, an attorney, filed a disability claim on his Dad’s behalf.   He experienced the same delays and frustrations experienced by many Americans who contend with our disability programs.  Since a malignant glioma was a rare condition, our examiners asked him to submit and re-submit additional medical evidence to confirm the diagnosis.  Despite the fact that his Dad was in a coma, he was required to answer a lengthy set of questions about his father’s ability to work.

The entire process left Mike determined to address the situation if given the opportunity.  I found it distressing and eye opening to watch my colleague go through this experience.  Over the next 20 years, I learned of many other disability applicants who experienced difficult and time-consuming hurdles in getting their claims approved.  These personal and professional experiences formed the basis for the Compassionate Allowance program.   

Richard Zorza:    What did you do to start the process of shaping the solution?

Diane Braunstein:  The first step was to ask the public for their ideas about how to create a fast-track process—and for suggestions on what conditions to include. We put a notice in the federal register requesting public comment, asked disability examiners and administrators for their ideas, sought advice from experts at the National Institutes of Health for advice, and orchestrated a series of public hearings designed to elicit a wide-range of ideas as to how to improve the system.

Richard Zorza:     What were the biggest problems in coming up with something that would work – and what did you do to get round them?

Diane Braunstein:  The first step was to get everyone to agree to swift project implementation.   In November 2007, I presented an 11-month implementation timeline to Senior Executives across the agency. The Senior Executives agreed to the plan. The timeline proved an invaluable resource in terms of driving the project forward.

Another hurdle was to develop and lead a business process workgroup.  Moreover, participants in the business process workgroup – cross-component agency managers and state DDS Directors – had to be convinced that their views were important and valued.  I had been gone from the agency for 14 years.  There were things about claims processing that I simply did not know.  I had to defer to the wisdom of my colleagues.  I carried messages from the workgroup up to the Commissioner and occasionally had to say; “that’s just not possible”.

There was also an ongoing problem with securing sufficient resources to implement the project.  While it was the Commissioner’s priority, the project had not previously been included in the agency’s annual resource planning processes. I overcame this problem with help from the Commissioner, invaluable guidance from my immediate supervisor, Glenn Sklar — and with flexibility, unshakable determination and very long hours. 

Richard Zorza:     What are the lessons that you take away for the problems of delay and high reversal rates within the program as a whole?

In the past, we had thousands and thousands of backlogged disability claims.  It was tragic. We had a small subset of claimants pass away while waiting for their respective hearings on a disability claim.  The waits were unconscionable.  In extreme cases, it could take close to four years to get in front of an administrative law judge for your “day in court”.

Fortunately, we have made tremendous headway in addressing this problem.   Our average processing times have dropped from about one and one-half years to less than a year.  Equally important, the number of backlogged cases has plummeted.  The percentage of our cases pending over 270 days continues to drop every month, with most of our cases now pending for less than 270 days. That is still a long time for a disabled person to wait.  For this reason, reducing the disability backlog remains a top priority for our agency — even in light of significant budget cuts by Congress.      

Richard Zorza:  Any ideas about what could be done to address those broader problems?

Diane Braunstein: To remain focused and to never forget that all of those “cases” are human beings waiting for an answer from their government.   

Richard Zorza:     What do you suggest advocates should do when they see a part of the system not functioning well, and they have ideas about what should be done to fix things?  Where should they take their suggestions for innovations?

Diane Braunstein:   The most important approach to take is to do more than just identify the problem. The key is to suggest possible options to address the issue.  The best solutions come from people on the ground with real experience.  In terms of where to take suggested innovations, I don’t think it’s always best to start at the top.  If you can find the Senior Executive responsible for a given area, you may find a sympathetic ear. More often than not, the best advocates are often internal advocates.

Richard Zorza:  Getting this project going obviously involved close collaboration between doctors and lawyers – two professions who do not always see eye to eye – any thoughts on how we might make this inter-profession relationship easier?

Diane Braunstein:   The key is to have both sets of professionals listen to one another.  That is what happened at the public hearings and why the hearings were so valuable.  Equally important, we involved the scientific community. Our National Institute of Health (NIH) colleagues were invaluable in helping to identify the state of the art in terms of cutting-edge diagnosis and treatment.  In planning for today, it’s always important to ask what’s next on the horizon?

Even so, I believe the critical piece of the puzzle was to hear from real people about their experience with the system.  For example, at the first hearing, we had a cadre of Moms talk about the difficulties they had encountered in applying for benefits for their children – many with incurable rare diseases.  They spoke so eloquently – and their testimony was extremely moving.  Their remarks left an enduring impression on the public and agency executives in the audience.     

Richard Zorza:     On a similar note, this project required extensive work with the advocacy community.  Have you any advice for advocates as to how they might be more effective in making themselves heard?

Diane Braunstein:   Again, offering constructive criticism is key – along with a willingness to listen.  Sometimes it’s just not possible for government executives to give advocates the response they want – but good ongoing working relationships can yield real and positive results in a many areas.

Richard Zorza:     Many of the readers of this blog are decision-makers in courts and other adjudicatory institutions.  Many are interested in how to simplify and speed decision-making, while protecting the right to be heard.  Any general thoughts on how to approach that process?

Diane Braunstein:  I would have to say “think small”.  Identify one problem you want to address — and work diligently to find and implement a solution to it. Then, move on to the next challenge.  Incremental change is easier to achieve than a global initiative – but small changes in government can make a big difference in people’s lives.   

Richard Zorza:     By the way, how does the project use technology?  Are there models there for how the project might be a model for broader changes in the system?

Diane Braunstein:  The project used existing technologies.   The agency had already developed a certified electronic disability folder and a predictive computer model to help identify claims with a high probability for approval.  Unique Compassionate Allowance innovations were to: 1) create electronically accessible desk guides to assist adjudicators to access information about Compassionate Allowance conditions instantaneously; and 2) to add global reference tables to the predictive computer model to enable the program to recognize about 10 alternative names for each compassionate allowance condition.  The global reference tables also enabled management to capture information about claim’s outcomes by specific disease name.      

Richard Zorza:     I understand you are in a very different position now – could you tell us a little about what you are doing now, and what the biggest and most interesting challenges are?

Diane Braunstein:  I manage the agency’s Office of International Programs.  The office is responsible for negotiating international social security agreements with foreign governments and for setting policy for the 600,000 Social Security beneficiaries living overseas. In terms of the 54 million people our agency pays benefits to each month, it is a small but extremely interesting area. On one hand, there are the predictable challenges associated with trying to fit a small square peg into a giant round hole.  On the other hand, I have met with Social Security colleagues worldwide. I have enjoyed the opportunity to learn about how other countries are addressing the same challenges we face.  Through this process, I’ve learned about a wealth of administrative and programmatic innovations employed by other countries.  That is my very favorite part of the job!

Richard Zorza:    On behalf of the tens of thousands whose final days have been made so much better, thanks so much.  We look forward to hearing of your next transformative achievement.

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About richardzorza

I am deeply involved in access to justice and the patient voice movement.
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