Diane K. Braunstein

Imagine that you were diagnosed with a terminal form of cancer or a rare and debilitating chronic disease, have applied for Social Security disability benefits to help make ends meet, and are placed on a long waiting list where the claim lingers without resolution.

This had been the unfortunate experience for thousands of Americans until Diane Braunstein and the team she assembled at the Social Security Administration (SSA) created a compassionate allowances program that ensures the benefits needed to help these individuals are approved in a matter of days or weeks rather than months or years.

About 45,000 people took advantage of this groundbreaking, fast-track process in fiscal 2010, and an estimated 65,000 will receive disability benefits through this system in 2011. The program was first launched on a small scale in October 2008.

“When Diane began working on compassionate allowances, some Americans were waiting two to four years for a decision,” said Social Security Commissioner Michael Astrue. “Now those with the most devastating disabilities will get approved for benefits in a matter of days.”

Social Security Disability Insurance, financed by the Social Security tax, is a federally run benefits program that provides aid to people who are unable to achieve gainful employment due to a permanent, disabling condition. The program for years has been plagued by backlogs and delays in processing claims, with pending cases in 2011 averaging close to 700,000, and with appeals of initial claim rejections often taking years to adjudicate.

The long waiting periods for benefits combined with a lack of caseworker knowledge of rare illnesses previously meant that some applicants with rare diseases and cancers were incorrectly denied federal benefits.

“These are horrendous conditions with inevitable outcomes,” said Deputy Social Security Commissioner David Rust.

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.

Dr. Steven Groft, director of the Office of Rare Diseases at NIH, said this program provides peace of mind and crucial assistance to families caring for a loved one who is facing death or severe and inevitable decline. “Diseases just don’t affect individuals, they affect families,” Groft said.

Groft said the partnership established with NIH by Braunstein allowed SSA to bring “the best thoughts” about which diseases should automatically qualify based on scientific and medical evidence.

“She also engaged and won the support of the health care community and patient advocacy groups who represent many rare diseases,” said Groft. “Diane made a difference. She’s really transformed lives through her willingness and dedication to drive this home.”

Reginald Wells, Social Security’s deputy commissioner for human resources, said Braunstein completed a detailed analysis, developed cost projections, worked with states to design a business process and ran many institutional gauntlets to get the program up and running. This included dealing with a change-adverse environment, providing training to implement the new program, and conferring with the legal, regulatory and legislative staffs.

“Diane’s leadership comes down to her willingness and ability to see the finish line in a long race. It’s not easy to envision creating something out of nothing, but she had the ability and perseverance to take the vision and make it real,” said Wells.

Braunstein has devoted many years to government service, but was working with the Alzheimer’s Association when she was recruited by SSA to build and run the compassionate allowance program.

“It was the opportunity of a lifetime; a chance to develop and implement a program that would provide vital assistance to children and adults when they most needed help,” said Braunstein. “In terms of making a positive change in people’s lives, it was a chance to work on a national scale—to make a difference in scope that is simply unparalleled.”

Under the compassionate allowance program, the medical diagnosis and documentation of the qualifying illnesses is sufficient to determine benefit eligibility and expedite the decision process. Some of the illnesses on the list include acute leukemia, certain brain cancers, inoperable breast, bone, bladder and stomach cancers, early onset Alzheimer’s and amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease.

Rust said Braunstein has been the driving force behind this important program.

“She wants to make a difference with people who have tough lives with these kinds of very serious, debilitating conditions,” said Rust. “She feels great empathy for her fellow Americans.”