The new list of compassionate allowances for Social Security benefits includes Alzheimer’s disease, rather unexpectedly. Although the national associations had been lobbying for this for years, what finally tipped the scale was a patient who went to a SSA panel meeting on the compassionate allowances, and spoke from the heart about his 14 month struggle to get benefits after his diagnosis. Sometimes, it pays to be your own advocate.

The list previously had 50 conditions — 25 rare diseases and 25 cancers. The change adding 38 conditions is effective March 1

Here is the story:

Michael J. Astrue, Commissioner of Social Security, today announced that the agency is making new data about beneficiaries and the agency’s disability and hearing processes available to the public.

Here are a few examples of the valuable Social Security datasets available today:

* Researchers can find out about the work-related experiences of our beneficiaries receiving Social Security disability benefits and give us policy guidance for our disability programs.
* The public can see information about hearings workloads and a breakdown of the types of decisions made by Administrative Law Judges.
* Researchers can study the effects of current and proposed legislative and program provisions.
* People who have requested a hearing on their disability claim can estimate the amount of time they may have to wait for the hearing to be held and for a decision.
* The public can see general information requested under the Freedom of Information Act.
To read the President’s Memorandum on Transparency and Open Government, click here:

From the (California) Capitol News: The worst recession in decades is a scary period for many American families. But it is a time of particular peril for those living with work-limiting disabilities, especially in states such as California, where involuntary furloughs and layoffs of state employees who process Social Security disability claims further bog down a system that is already in crisis.

The Social Security Disability Insurance (SSDI) system worked well for decades, but it is creaking under the weight of a growing population of people with disabilities, increasing demands on the Social Security Administration and a wave of government retirements. Social Security employees work as hard as they can to help people who deserve care, but their best efforts are only slowly winnowing down a hearing backlog of nearly 723,000 disabled Americans—including 66,000 Californians—waiting months or years to receive their rightful benefits.

The recession is making things even worse. From 2004 through 2007, application levels were stable, with the SSA processing between 2.1 million and 2.2 million SSDI applications each year. Last year, more than 2.7 million people filed SSDI applications. See article here:

TIme Magazine reports today that Social Security officials expect an even larger spike in new disability claims than before, as aging, injured baby boomers tumble out of the work force and need income.

This is not good news, as the system was already bogged down at several points, and has been the target of unfavorable media reports documenting unconscionable waits for decisions on benefits.

Time’s article says that Social Security estimates they’ll receive 3.3 million new disability claims over the next year, up from their previous estimate of 3 million projected just five months ago.

The wave of new applications comes just as officials were making progress in curbing a massive backlog of disability appeals cases, which has plagued the agency for years. Also adding to the problem are recent moves in at least 10 states to furlough hundreds of employees that process initial benefit claims.See full Time article here:

Michael J. Astrue, Commissioner of Social Security, today hosted the agency’s fourth public hearing on Compassionate Allowances. Commissioner Astrue was joined by Marie A. Bernard, M.D., Deputy Director of the National Institute on Aging, National Institutes of Health, and other Social Security officials. They heard testimony from some of the nation’s leading experts on early-onset Alzheimer’s disease and related dementias about possible methods for identifying and implementing Compassionate Allowances for people with early-onset Alzheimer’s.

“This year, through Compassionate Allowances and our Quick Disability Determination process, over 100,000 Americans with severe disabilities will be approved for Social Security disability benefits in a matter of days rather than the months and years it can sometimes take,” said Commissioner Astrue. “We are now looking to add more diseases and impairments to these expedited processes. With today’s hearing, we are expanding our focus from specific rare diseases and cancers to look at subgroups of much broader conditions. Early-onset Alzheimer’s disease is a rapidly progressive and debilitating disease of the brain that affects individuals between the ages of 50 and 65 and clearly deserves our consideration.”

In October 2008, Social Security launched Compassionate Allowances to expedite the processing of disability claims for applicants with medical conditions so severe that their conditions by definition meet Social Security’s standards. To learn more and to view a web cast of today’s hearing, go to www.socialsecurity.gov/compassionateallowances.

“With the aging of the baby-boomers, we are beginning to see more, younger working Americans diagnosed with this devastating disease,” Commissioner Astrue said. “I want to thank the Alzheimer’s Association and their staff, particularly Harry Johns, President and CEO. Their help has been invaluable and many of the witnesses are here at their suggestion. Together, we hope to identify the most severe cases that can be included in our Compassionate Allowances process.”

The 24-month wait for Medicare is one of the most puzzling parts of disability benefits. Why should the folks who paid in to Social Security for a lifetime of work be the ones who wait? People on SSI get Medicaid immediately – and it should be like that for everyone. Let’s hope Obama’s heath care reform addresses this point. Read this story from the Dallas Morning News to see the impact of waiting:

…”Under current law, however, those with disabilities aren’t eligible for Medicare until two years after they begin receiving Social Security disability insurance checks. Johnson is one of 1.8 million disabled Americans in that two-year waiting period.

“No longer able to work, she became eligible for Social Security disability benefits in February 2008, which means she has seven months left until she goes on Medicare.

“Because she can’t afford private insurance, she prays that her condition doesn’t worsen before then.

“It’s not my fault that I’m disabled,” Johnson said. “I paid my Social Security and Medicare taxes during my entire working life. Why now, when I most need the care, must I wait so long? It doesn’t seem fair.” See complete article here:

From today’s Atlanta Journal Constitution: The Social Security Administration has reduced its staffing by more than 5 percent since 2003, to about 60,000.

That means seniors such as Early Graham of Raleigh, N.C., have dealt with long hold times and promises of return calls that never come.

“I had to call three different numbers before I got anyone on the phone,” Graham said.

Brian Simpson, a spokesman at the Social Security office in Raleigh, said he hears similar complaints all the time.

Trying to handle customer demand with fewer employees, the agency has shifted some workers away from phone lines to front desks to assist walk-in clients.See Full story here:

While Social Security predicts a substantial reduction in waits for hearings by 2012, many claimants need a more immediate fix. This article discusses the reasons and some remedies for hearing delays:

“Many people are denied disability benefits at the first two levels (Application for benefits and Request for Reconsideration). The third step in the process is the Request for Hearing before an Administrative Law Judge. At this stage, most claims have the greatest chance of being approved. The problem is that the greatest delays occur at this level.
The Administration has been confronted by a significant backlog on
cases pending decision and dispositions.
In FY 2007, SSA’s National Hearings Average Processing Time was 512
days for all dispositions. (see
www.ssa.gov for a thorough
discussions of the “whys and wherefores”…)

See entire article here.

Charles Hall’s blog today nicely supplies graphics for the delays at the Social Security Hearing office, by city. These were orginally published in the newsletter of NOSSCR (National Organization of Social Security Claimants’ Representatives) The worst is well over 600 days wait, the “best” hearing office has a wait of 200+ days. (Click on the images in Mr. Halls blog to enlarge.)

Not much progress has been made in spite of a variety of measures to speed up service delivery – claims are simply coming in faster than they are being resolved. Overall, between January 1007 and April 2009, the average wait for a hearing has just been reduced from 508 to 505 days. Keep in mind that this wait is AFTER denials on initial and reconsideration aspects of the claim, which can take more than a year.

Compare the average processing time as it has changed over time:

January 25, 2007 — 508 days
May 25, 2007 — 523 days
July 28, 2007 — 528 days
August 31, 2007 — 523 days
November 30, 2007 — 500 days
February 29, 2008 — 511 days
May 30, 2008 — 523 days
June 27, 2008 — 529 days
July 31, 2008 — 530 days
September 3, 2008 — 532 days
November 5, 2008 — 476 days
December 3, 2008 — 480 days
March 8, 2009 — 499 days
April 24, 2009 — 505 days

See Mr. Hall’s blog for the list of cities and their respective waiting times:

Over the past year, the newspaper The Oregonian, Portland and Oregon’s local paper, has been running a series carefully documenting the devastating delays at the Social Security hearing offices, putting a human face on this non-comedy of errors and underfunding. Brent Walth and Bryan Denson of The Oregonian have just won the prestigious Bruce Baer Award for Investigative Reporting, for uncovering the enormous backlog of disability claims in the Social Security system. The articles showed that while claims management is a nationwide problem, Social Security Administration’s Portland office has one of the slowest case-completion rates in the country. The reporters found several cases in which claimants died while waiting for a benefits determination from the office: On average, it takes nearly two years for the Portland office to handle the appeal of a case.