Thirty-Eight New Compassionate Allowance Conditions

The snowstorm is not preventing Social Security's Press Office from doing its job. Here is another press release from the agency this morning:

Michael J. Astrue, Commissioner of Social Security, today announced that the agency is adding 38 more conditions to its list of Compassionate Allowances. This is the first expansion since the original list of 50 conditions - 25 rare diseases and 25 cancers - was announced in October 2008. The new conditions range from adult brain disorders to rare diseases that primarily affect children. The complete list of the new Compassionate Allowance conditions is attached.

“The addition of these new conditions expands the scope of Compassionate Allowances to a broader subgroup of conditions like early-onset Alzheimer’s disease,” Commissioner Astrue said. “The expansion we are announcing today means tens of thousands of Americans with devastating disabilities will now get approved for benefits in a matter of days rather than months and years.”

Compassionate Allowances are a way of quickly identifying diseases and other medical conditions that clearly qualify for Social Security and Supplemental Security Income disability benefits. It allows the agency to electronically target and make speedy decisions for the most obviously disabled individuals. In developing the expanded list of conditions, Social Security held public hearings and worked closely with the National Institutes of Health, the Alzheimer’s Association, the National Organization for Rare Disorders, and other groups.

"The diagnosis of Alzheimer's indicates significant cognitive impairment that interferes with daily living activities, including the ability to work," said Harry Johns, President and CEO of the Alzheimer's Association. "Now, individuals who are dealing with the enormous challenges of Alzheimer's won't also have to endure the financial and emotional toll of a long disability decision process."

“This truly innovative program will provide invaluable assistance and support to patients and families coping with severely disabling rare diseases,” said Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD). “On behalf of those patients and families, I want to thank Commissioner Astrue and his enthusiastic team for creating and now expanding a program that will have a direct impact on the quality of life of thousands of individuals."

“The initiative not only assists those whose applications are quickly processed, but also assists those whose applications need more time and attention from SSA adjudicators,” said Marty Ford, Co-Chair, Social Security Task Force, Consortium for Citizens with Disabilities. “We are pleased to see today's expansion and look forward to working with Commissioner Astrue on further expansion of this decision-making tool and other ways to expedite determinations and decisions for disability claims.”

“We will continue to hold hearings and look for other diseases and conditions that can be added to our list of Compassionate Allowances," Commissioner Astrue said. “There can be no higher priority than getting disability benefits quickly to those Americans with these severe and life-threatening conditions.”

Social Security will begin electronically identifying these 38 new conditions March 1.

For more information about the agency’s Compassionate Allowances initiative, go to www.socialsecurity.gov/compassionateallowances.

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New Compassionate Allowance Conditions

1. Alstrom Syndrome
2. Amegakaryocytic Thrombocytopenia
3. Ataxia Spinocerebellar
4. Ataxia Telangiectasia
5. Batten Disease
6. Bilateral Retinoblastoma
7. Cri du Chat Syndrome
8. Degos Disease
9. Early-Onset Alzheimer’s Disease
10. Edwards Syndrome
11. Fibrodysplasia Ossificans Progressiva
12. Fukuyama Congenital Muscular Dystrophy
13. Glutaric Acidemia Type II
14. Hemophagocytic Lymphohistiocytosis (HLH), Familial Type
15. Hurler Syndrome, Type IH
16. Hunter Syndrome, Type II
17. Idiopathic Pulmonary Fibrosis
18. Junctional Epidermolysis Bullosa, Lethal Type
19. Late Infantile Neuronal Ceroid Lipofuscinoses
20. Leigh’s Disease
21. Maple Syrup Urine Disease
22. Merosin Deficient Congenital Muscular Dystrophy
23. Mixed Dementia
24. Mucosal Malignant Melanoma
25. Neonatal Adrenoleukodystrophy
26. Neuronal Ceroid Lipofuscinoses, Infantile Type
27. Niemann-Pick Type C
28. Patau Syndrome
29. Primary Progressive Aphasia
30. Progressive Multifocal Leukoencephalopathy
31. Sanfilippo Syndrome
32. Subacute Sclerosis Panencephalitis
33. Tay Sachs Disease
34. Thanatophoric Dysplasia, Type 1
35. Ullrich Congenital Muscular Dystrophy
36. Walker Warburg Syndrome
37. Wolman Disease
38. Zellweger Syndrome

The only definitive way of diagnosing Alzheimer's disease is with a brain biopsy and those are rarely done. I predict that putting early onset Alzheimer's on the list will mean nothing since Social Security will just claim that there is inadequate proof that the claimant is suffering from Alzheimer's until the claimant is institutionalized.

Backup And Redundancy

Social Security has built a new backup computer center near Durham, NC. Has it been used to help out since the snowfall must be keeping almost all employees at home preventing proper operation of Social Security's main data processing center in Baltimore?

Also, the Department of the Treasury prints and mails all those Social Security checks. Much of this work is done at a Treasury center in Philadelphia. The weather in Philly has received little national attention but it has to be bad there. I have not heard or read of delays in issuing Social Security and VA checks so I hope that Treasury has been able to shift printing and mailing of these checks to other centers. I have to imagine that Treasury has plenty of backup and redundancy because of the threat of terrorist attack.

Apart from the backup computer center in Durham, I wonder whether Social Security has adequate backup and redundancy for contingencies. This snowstorm is bad but terrorist attacks, fires and floods could be worse. Budgets have been terribly tight for decades at Social Security. I hope that the agency suffers nothing worse than this snowstorm.

Social Security And Open Government

A press release from Social Security:

Michael J. Astrue, Commissioner of Social Security, announced that the agency has a new Open Government webpage available to the public at www.socialsecurity.gov/open. The new webpage serves as the portal for all agency activities that support the President’s Transparency and Open Government initiative.

“Our new Open Government webpage gives Americans an opportunity to give us their ideas on how we can become a more open and transparent agency,” Commissioner Astrue said. “They will be able to post their ideas on transparency, participation, collaboration, and innovation that should be included in our Open Government Plan. I encourage everyone to visit our webpage and submit their ideas, read and discuss what has been posted, and vote on the ideas that have been submitted."

To submit ideas, click on the link at the top right of the webpage that says, “Share your ideas on our open government plan.” After agreeing to the terms of participation, the link will take you to a webpage that asks for ideas on how Social Security can:

• work better with others inside and outside the government;
• solicit feedback from the public;
• improve the availability and quality of information;
• be more innovative and efficient;
• create an Open Government Plan.

Social Security’s new Open Government webpage also provides easy access to important agency information such as the Agency Strategic Plan, Freedom of Information Act Report, as well as program laws and regulations. The webpage includes links to the datasets that were published last month on www.Data.gov. The agency will publish its Open Government Plan in April.

Cental Offices Remain Closed

In case you were wondering, Social Security's Central Offices in the Baltimore-Washington area remain closed due to the snowstorm.

It Always Takes Longer Than You Expect

On December 31, 2009 Social Security was expecting to open a new hearing office in Fayetteville, NC in August, 2010. Now comes word that the General Services Administration (GSA) has signed a long term lease for space for that hearing office. It sounds like things are right on schedule. Unfortunately, the lease was signed for space in what is currently a burned out shell of a building. The owner of the building has only preliminary drawings for what will be done with the space and is unable to give a timeline for construction until financial arrangements are completed.

I think it would be a safe bet that the new hearing office will not open until well after August, 2010.

By the way, Social Security is leasing 16,000 square feet of space but only plans to have 54 employees in the office. They must be giving the office plenty of room to grow into.

The Show Must Go On

Even though government offices in Washington have been closed for two days now due to snowfall and the area is experiencing another heavy snowfall today, the government employees at the Office of Federal Register still plan to put out an edition tomorrow!

Central Offices Remain Closed

Social Security's offices in the Baltimore-Washington area remain closed today due to the heavy snowfall. More snow is predicted. There is no telling how long this closure could last.

Strange Ruling In Pennsylvania

A court in Pennsylvania has ruled that a worker who files a claim for Social Security retirement benefits forfeits all rights to periodic workers compensation benefits because he has removed himself from the labor market.