New Conditions Added To Compassionate Allowance List

    Social Security is adding some new conditions to its compassionate allowance list of conditions that are supposed to result in having disability claims approved quickly. I think the least uncommon one on the adult list would be "Adult Heart Transplant Wait List – Status Levels 1-4."  Here's a description of what those status levels mean:

• 1 - 3: Most often hospitalized in ICU to support their heart.
• 4: This group is often at home but may need IV medications or VAD [Ventricular Assistive Device] to support their heart.
• 6: This group includes all others who are stable enough to remain home while they wait for a heart.
  

    I think anyone in status level 1-4 would easily meet a Listing anyway so I can't say this means much.

    Also, I've had clients who were on a heart transplant list and I don't recall any mention of a Status Level in their medical records.

Commissioner's Message On Compassionate Allowances

From: ^Commissioner Broadcast
Sent: Thursday, October 25, 2018 10:38 AM
Subject: Ten Years of Compassionate Allowances!

A Message To All SSA and DDS Employees 

Subject: Ten Years of Compassionate Allowances!

On October 27^th, we will celebrate the 10^th Anniversary of the Compassionate Allowances program.  Over the past decade, Compassionate Allowances have helped us identify and fast-track cases for individuals who have diseases and other medical conditions that are most likely to be approved for disability benefits.  To date, over 500,000 people with serious disabilities have been approved through this fast-track, policy-compliant disability process. 

In August, we added five new conditions to the list.  Their inclusion continues our commitment to ensure people with qualifying disabilities quickly receive the benefits they need.  For a complete list of conditions and other useful information, I encourage you to visit our Compassionate Allowances page.

In celebrating 10 years of the Compassionate Allowances program, we also celebrate you.  To each of you, I say ‘thank you’ for your excellence and dedication in making a difference in the lives of those we serve each day.

Nancy A. Berryhill
Acting Commissioner

Five Rare Disorders Added To Compassionate Allowance List

     Social Security has added the following new medical conditions to its Compassionate Allowance list: 

• Fibrolamellar Cancer
• Megacystis Microcolon Intestinal Hypoperistalsis Syndrome
• Megalencephaly-Capillary Malformation Syndrome
• Superficial Siderosis of the Central Nervous System
• Tetrasomy 18p 

     These are all rare disorders. It's rare for any compassionate disorder condition to show up in a disability claim. I've yet to see one.

     It always seems like Social Security adds to the compassionate allowance list when they've got a Congressional hearing coming up and they want to show how, uh, "compassionate" they are. I don't know of an upcoming Congressional hearing, however.

Cynical Move

     There's a Congressional hearing tomorrow on the enormous backlog of Social Security disability claims awaiting adjudication. This afternoon, Social Security adds three extremely rare conditions to its "compassionate allowance" list. The "compassionate allowance" list is and always has been meaningless. It's just a list of rare conditions for which a disability claim would be approved anyway. The list has always been a way of pretending to do something about the backlogs while actually doing nothing of consequence. The compassionate allowance list is just a fig leaf for Social Security and Congress to hide behind. If you work at Social Security and you think otherwise, you either don't understand the situation or you're fooling yourself.

OIG On Compassionate Allowances And Quick Disability Determinations

     The summary of a recent report by Social Security's Office of Inspector General:

Although 25 percent of allowed claimants in our sample [who were granted a Compassionate Allowance or Quick Disability Determination] died within 3 months of submitting their application, SSA’s CAL [Compassionate Allowance] and QDD [Quick Disability Determination] initiatives enabled the Agency to identify and expedite benefits to these disabled claimants before their death.

Based on our review, we estimated that SSA medically allowed about 76,000 and denied about 6,000 cases. As of June 2015, we estimated that, of the cases selected for CAL and QDD processing, about 

• 54,000 claimants were deceased; 
• 15,000 claimants allowed benefits were alive, were in current pay status, and had received approximately $214.1 million in benefits per year;
• 7,000 claimants allowed benefits were alive but did not meet Title XVI non - medical eligibility criteria. SSA stopped the ir Title XVI payments of approximately $34 million per year; 
• 3,000 claimants allowed had benefits ceased because of medical improvement, stopping payments of approximately $46.1 million per year; and 
• 3,000 claimants denied benefits, appealed or reapplied, and were subsequently approved. 

In addition, we estimated that, for about 13,000 claimants previously allowed benefits, SSA assessed approximately $43.9 million in overpayments and recovered approximately $15.9 million. Finally, we estimated that SSA reviewed approximately 22,000 allowance cases by conducting a CDR or redetermination and generally evaluated earnings for disabled individuals whose record contained work activity or income.

Exactly Twenty-Five Additions To Compassionate Allowance List

     Social Security has made 25 additions to its "compassionate allowance" list. Why is it that additions to this list always come in round numbers?  Here's the new list:

1. Angiosarcoma
2. Atypical Teratoid/Rhabdoid Tumor
3. Chronic Idiopathic Intestinal Pseudo Obstruction
4. Coffin-Lowry Syndrome
5. Esthesioneuroblastoma
6. Giant Axonal Neuropathy
7. Hoyeaal-Hreidarsson Syndrome
8. Intracranial Hemangiopericytoma
9. Joubert Syndrome
10. Leptomeningeal Carcinomatosis
11. Liposarcoma- metastatic or recurrent
12. Malignant Ectomesenchymoma
13. Malignant Renal Rhabdoid Tumor
14. Marshall-Smith Syndrome
15. Oligodendroglioma Brain Tumor- Grade III
16. Pallister-Killian Syndrome
17. Progressive Bulbar Palsy
18. Prostate Cancer - Hormone Refractory Disease - or with visceral metastases
19. Revesz Syndrome
20. Seckel Syndrome
21. Sjogren-Larsson Syndrome
22. Small Cell Cancer of the Thymus
23. Soft Tissue Sarcoma- with distant metastases or recurrent
24. X-Linked Lymphoproliferative Disease
25. X-Linked Myotubular Myopathy

I Don't Understand

     The Associated Press has just put out a story saying that Social Security has expanded its compassionate allowance program to allow more disabled people to get on disability benefits with less delay. There's just one problem. As best I can tell, Social Security issued a press release to this effect in July but has done nothing since on compassionate allowances. Maybe, Social Security has done something recently and just told the AP but that seems unlikely. More likely the AP has gotten confused and thinks the July press release was just issued.

     Update: Social Security must have told the AP but forgot to issue the press release. It's hard to see Social Security intentionally giving the AP an "exclusive" on something like this. Social Security just issued the press release. Thirty-five conditions were added to the compassionate allowance list:


Adult Non-Hodgkin Lymphoma

Adult Onset Huntington Disease

Allan-Herndon-Dudley Syndrome

Alveolar Soft Part Sarcoma

Aplastic Anemia 

Beta Thalassemia Major

Bilateral Optic Atrophy- Infantile

Caudal Regression Syndrome - Types III and IV

Child T-Cell Lymphoblastic Lymphoma


DeSanctis Cacchione Syndrome

Dravet Syndrome

Congenital Lymphedema

Endometrial Stromal Sarcoma

Erdheim Chester Disease

Fryns Syndrome

Fulminant Giant Cell Myocarditis

Hepatopulmonary Syndrome

Hepatorenal Syndrome

Jervell and Lange-Nielsen Syndrome

Leiomyosarcoma

Malignant Gastrointestinal Stromal Tumor

Malignant Germ Cell Tumor

MECP2 Duplication Syndrome

Menkes Disease - Classic or Infantile Onset Form

NFU-1 Mitochondrial Disease

Nonketotic Hyperglycinemia

Peritoneal Mucinous Carcinomatosis

Phelan-McDermid Syndrome

Retinopathy of Prematurity - Stage V

Severe Combined Immunodeficiency - Childhood

Sinonasal Cancer

Transplant Coronary Artery Vasculopathy

Usher Syndrome - Type I

One Little Thing Not Mentioned In Yesterday's Press Release

     In addition to partially duplicating and to some extent contradicting Social Security's Listing of Impairments, the additions to the Compassionate Allowance list announced yesterday won't even be effective until August 13, 2012, a point that was not mentioned in the press release. What was the point of announcing a policy that won't even be in effect for more than three months?

     Once Social Security gets a new Commissioner next year this whole compassionate allowance thing needs to get folded into the Listings. That's what the Listings are for. If the Listings were inadequate, they should have been amended. There was no need to add another layer on top of the Listings. It's just confusing to those who have to administer the program.

Additions To Compassionate Allowances

     Social Security has sent out a press release announcing that 52 conditions have been added to the agency's Compassionate Allowance list. Several of the conditions listed are already in Social Security's Listings of Impairments, often with restrictions not included in this list, meaning that this list to some extent contradicts Social Security's regulations! I have not done an exhaustive survey. I expect there are others where an item on this list is included in the Listings but under a more general description. I believe that hepatoblastoma might be an example since all tumors of the liver meet Listing 13.19. Also, if I remember correctly, tabes dorsalis used to be in the Listings but was removed. Here are the newly added conditions with my notation in bold of the ones where there is a Listing:

• Aicardi-Goutieres Syndrome
• Alobar Holoprosencephaly 
• Alpers Disease
• Alpha Mannosidosis
• Carcinoma of Unknown Primary Site Listing 13.27
• Cerebrotendinous Xanthomatosis
• Child Neuroblastoma Listing 113.21
• Child Non-Hodgkin Lymphoma Listing 113.05
• Chondrosarcoma with multimodal therapy
• Cornelia de Lange Syndrome-Classic Form
• Ewings Sarcoma 
• Follicular Dendritic Cell Sarcoma with metastases
• Fucosidosis - Type 1
• Galactosialidosis - Early Infantile Type
• Glioma Grade III and IV
• Hallervorden-Spatz Disease
• Hepatoblastoma
• Histiocytosis
• Hutchinson-Gilford Progeria Syndrome
• Hydranencephaly
• Hypocomplementemic Urticarial Vasculitis
• Hypophosphatasia Perinatal lethal Form
• I Cell disease
• Infantile Free Sialic Acid Storage Disease
• Juvenile Onset Huntington Disease
• Kufs Disease Type A and B
• Lissencephaly
• Lymphomatoid Granulomatosis Grade III 
• Malignant Brain Stem Gliomas - Childhood
• Malignant Melanoma with metastases Listing 13.03
• Mastocytosis Type IV
• Medulloblastoma with metastasis
• Merkel Cell Carcinoma with metastases
• Myocolonic Epilepsy and Ragged Red Fibers Syndrome
• Nephrogenic Systemic Fibrosis Obliterative Bronchiolitis 
• Ohtahara Syndrome
• Orthochromatic Leukodystrophy with Pigmented Glia
• Pearson Syndrome
• Pelizaeus-Merzbacher Disease-Classic Form
• Pelizaeus-Merzbacher Disease-Connatal Form
• Peripheral Nerve Cancer - metastatic or recurrent Listing 13.13.B
• Perry  Syndrome 
• Rhabdomyosarcoma 
• Rhizomelic Chondrodysplasia Punctata
• Schindler Disease Type 1
• Smith Lemli Opitz Syndrome
• Spinal Nerve Root Cancer- metastatic or recurrent
• Stiff Person Syndrome
• Tabes Dorsalis
• Wolf-Hirschhorn Syndrome
• Xeroderma Pigmentosum Listings 8.07 and 108.07

Additions To Compassionate Allowance List

Social Security has issued a press release touting the addition of the following to its Compassionate Allowance list:

• Malignant Multiple Sclerosis
• Paraneoplastic Pemphigus
• Multicentric Castleman Disease
• Pulmonary Kaposi Sarcoma
• Primary Central Nervous System Lymphoma
• Primary Effusion Lymphoma
• Angelman Syndrome
• Lewy Body Dementia
• Lowe Syndrome
• Corticobasal Degeneration
• Multiple System Atrophy
• Progressive Supranuclear Palsy
• The ALS/Parkinsonism Dementia Complex

Braunstein Wins Award For Compassionate Allowance Program

     A press release from Social Security:

Diane Braunstein, now the Associate Commissioner for International Programs, received the 2011 Citizen Services Medal from the Partnership for Public Service at last night’s Samuel J. Heyman Service to America Medal Awards Gala.  Ms. Braunstein oversaw the development of the Compassionate Allowances program, which fast-tracks disability decisions to ensure that Americans with the most serious disabilities receive their benefit decisions within days instead of months or years.

“All of us at Social Security are very proud of Diane and the results of her hard work on Compassionate Allowances,” said Michael J. Astrue, Commissioner of Social Security.  “Through her efforts, this expedited process has already helped about 100,000 people with severe disabilities get benefit decisions within days instead of months or years.”

The Compassionate Allowances initiative identifies claims that are likely allowances because the nature of the applicant’s disease or condition clearly meets the statutory standard for disability. With the help of sophisticated new information technology, the agency can quickly identify potential Compassionate Allowances and then quickly make decisions.

Social Security launched the program in 2008 with a list of 50 diseases and conditions.  It recently announced 12 new conditions involving severe heart diseases, which increased the total number of Compassionate Allowances conditions to 100.  The conditions include certain cancers, adult brain disorders, a number of rare genetic disorders of children, early-onset Alzheimer’s disease, idiopathic pulmonary fibrosis, and other disorders. The agency is continually adding new conditions or diseases to the list, and recently announced a small grant program for graduate students that will help Social Security improve its list.

The legacy of Ms Braunstein’s work with Compassionate Allowances will expand access to disability benefits to Americans with the most severe disabilities while reducing the backlog of disability applications.  Quicker decisions and expedited processes reduce the burden on the medical community because they no longer need to provide extensive medical records for these cases.  If a person reports a condition found on the Compassionate Allowance list, Social Security simply confirms the condition with the medical source.  The program also reduces the burden on businesses of producing employment records.

The application process is now faster for people applying under the Compassionate Allowances program.  The online disability application at www.socialsecurity.gov recognizes conditions that qualify for Compassionate Allowances and streamlines the application by omitting information not needed for the agency’s decision.

     I would like to celebrate this achievement but I have seen no evidence that compassionate allowances amounts to anything more than meaningless public relations. The same people would have been approved in the same time frame.

Compassion Rewarded

From the Washington Post:

Diane Braunstein’s large smile and warm laugh can be infectious. She speaks calmly as she sits in a high-backed, dark wooden chair in her spacious Baltimore office, a master bureaucrat.

If that seems a cold or callous characterization, her actions have been anything but. One look at her résumé shows she’s spent a lifetime mastering the minutia of process and regulation on behalf of the elderly, the ill and the disabled at the Social Security Administration and other organizations.

Social Security Commissioner Michael J. Astrue appointed Braunstein director of a program called Compassionate Allow­ances in 2007 after she helped him about 20 years earlier when his terminally ill father could not quickly obtain benefits.

The two were working together at the Department of Health and Human Services. Astrue’s father developed glioblastoma, an often-fatal brain cancer that resulted in a coma. Astrue found himself trying to file for benefits on behalf of someone who wasn’t able to speak.

“It was a huge surprise and a time of high anxiety,” he said. “Having someone as competent as Diane was a great blessing.”

More Compassionate Allowance Conditions Added

A press release from Social Security:

Michael J. Astrue, Commissioner of Social Security, today announced 12 additional Compassionate Allowances conditions involving severe heart diseases, bringing the total number of conditions in the expedited disability process to 100. Compassionate Allowances are a way to quickly identify diseases and other medical conditions that, by definition, meet Social Security’s standards for disability benefits. These conditions primarily include certain cancers, adult brain disorders, and a number of rare disorders that affect children. 

“We have reached a significant milestone for the Compassionate Allowances program,” Commissioner Astrue said. “We have an obligation to award benefits quickly to people whose medical conditions are so serious they clearly meet our disability standards. We are now able to do precisely that for 100 severe conditions.”

The Compassionate Allowances initiative is one of two parts of the agency’s fast-track system for certain disability claims. When combined with the Quick Disability Determination process, Social Security last year approved more than 100,000 cases, usually in less than two weeks. This year, the agency expects to fast-track nearly 150,000 cases.

Social Security has held seven public hearings and worked with experts to develop the list of Compassionate Allowances conditions. The hearings also have helped the agency identify additional ways to improve the disability process for applicants with Compassionate Allowances conditions. “By definition, these illnesses are so severe that we don’t need to fully develop the applicant’s work history to make a decision,” said Commissioner Astrue. As a result, beginning in August, Social Security is eliminating this part of the application process for people who have a condition on the list.

 Here is the list of the 100 conditions. I cannot find a list just of the new 12. I have said before that the whole compassionate allowances program is virtually meaningless since anyone with any of the problems would have been approved quickly anyway.

Commissioner Holds Hearing On Compassionate Allowances In Autoimmune Disorder Cases

The Commissioner of Social Security held a public hearing on compassionate allowances in autoimmune disorder cases on March 16.

Just last week I met with three new clients suffering from systemic lupus erythematosus, (SLE) an autoimmune disorder, or at least one that is frequently classified as an autoimmune disorder. These days I am taking on more multiple sclerosis (MS) cases than ever before. MS can also be characterized as an autoimmune disorder.

Is anything the Commissioner doing with compassionate allowances going to help my SLE or MS clients? Not likely. Can anyone give me an example of someone who would be helped by compassionate allowances who wouldn't have been quickly approved anyway?

As pet projects go, compassionate allowances is innocuous. It is certainly better than former Commissioner Barnhart's Disability Service Improvement (DSI) fiasco although DSI included "Quick Disability Determinations" (QDD) for those who were "obviously disabled." I have not seen any explanation of the difference between QDD and compassionate allowances. As a practical matter, I do not think there is a difference beyond the fact that Astrue is Commissioner and Barnhart is gone.

Cardiovascular Disease And Compassionate Allowance Hearing

A press release from Social Security:

Michael J. Astrue, Commissioner of Social Security, today hosted at the University of Maryland, Baltimore County, the agency’s sixth public hearing on Compassionate Allowances. Commissioner Astrue joined Susan B. Shurin, Acting Director of the National Heart, Lung, and Blood Institute, National Institutes of Health, and other Social Security officials in listening to testimony from some of the leading experts on cardiovascular disease and multiple organ transplants regarding possible methods of identifying and implementing Compassionate Allowances for both adults and children.

“Compassionate Allowances and the Quick Disability Determination process are making a real difference for disabled Americans by ensuring those with devastating disabilities receive their benefit decisions quickly and accurately,” Commissioner Astrue said. “This fiscal year, about 150,000 people will benefit from these fast-track disability processes. With this hearing, we continue to look at broader categories of conditions to determine if a subset or certain diagnosis might clearly meet our disability standards and qualify as a Compassionate Allowance.”

Social Security implemented Compassionate Allowances in October 2008 to expedite the processing of disability claims for applicants with medical conditions so severe that their conditions by definition meet Social Security's standards. There currently are 88 specific diseases and conditions that qualify as a Compassionate Allowance. To learn more and to view a web cast of today’s hearing, go to www.socialsecurity.gov/compassionateallowances.

“Cardiovascular disease is the leading cause of death for both men and women in America,” said Commissioner Astrue. “More than 95,000 people are currently waiting for an organ transplant and nearly 4,000 are added to the waiting list each month. Today’s hearing will help us move one step closer to ensuring quick and accurate disability decisions for those with the most severe conditions.”

New Rules For QDDs And Compassionate Allowances

From today's Federal Register:

We are revising our rules on a temporary basis to permit State agency disability examiners to make fully favorable determinations in certain claims for disability benefits under titles II and XVI of the Social Security Act (Act) without the approval of a State agency medical or psychological consultant. These changes apply only to claims we consider under our rules for quick disability determinations (QDD) or under our compassionate allowance initiative.

Public Hearing On Compassionate Allowances

How many Social Security Commissioners have thought that one key to solving Social Security's disability backlog is finding ways to speed up allowances for those who are most obviously disabled? I have not kept count but I think it has been at least the last three. The current Commissioner has scheduled a public hearing on his Compassionate Allowance plan for November 9 in Baltimore. The subject of this hearing is cardiovascular diseases and multiple organ transplants.

It's Time To Earn That Award

Social Security Commissioner Michael Astrue received an award from the Alzheimer's Association for adding Alzheimer's to the list of cases eligible for "compassionate allowance" of disability claims. I consider the "compassionate allowances" list as meaningless since Social Security was already approving everybody on the compassionate allowance list and generally doing so rapidly. To me, the award seemed undeserved since nothing of consequence had happened.

Now, the Alzheimer's Association is announcing new diagnostic criteria for Alzheimer's disease. These new criteria are expected to double or triple the number of people being diagnosed with Alzheimer's disease. Quickly adopting these new criteria for purposes of adjudicating Social Security disability claims would actually be of benefit to Alzheimer's patients and their families. Will the Commissioner step up and do something meaningful to justify that award he received?

I Wish It Were True, But It's NOT TRUE!

From The Daily Tribune of Oakland County, Michigan:

People with early-onset Alzheimer's disease or any of 37 other diseases now are eligible for Medicare benefits without having to wait two years after being diagnosed.

Currently, the Social Security Administration has a "compassionate allowance" for people with any of 50 different diseases, most of which are fatal, that allows the patient to begin receiving medical coverage under Medicare without being 65 or having to comply with the mandatory two-year wait after becoming eligible for Social Security Disability Insurance.

"These patients will no longer be stuck in 'no-man's land' in regards to medical coverage," said Carrie Collins, the client access director for the Alzheimer's Association.

I have no idea where this came from but it is completely wrong. There are only two exceptions to the two year waiting period for Medicare, Amyotrophic Lateral Sclerosis and End Stage Renal Disease (ESRD). The ESRD exception is only for Part A of Medicare. I hope the Alzheimer's Association nationally is not spreading this nonsense. The Commissioner of Social Security has no authority to change that.

Compassionate Allowance Cases To Be Given Priority

A recent issuance in Social Security's Program Operations Manual Series (POMS) gives some details on processing of compassionate allowance cases. One important detail is that these cases are to be given priority at all levels or review.