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

The agency announced a small grant program for graduate students that will help Social Security improve its list and has recently awarded an approximately $1.8 million grant over a five-year period to Policy Research, Incorporated (PRI) through the Disability Determination Process Small Grant Program.  This new program aims to improve the disability process through innovative research by graduate students who will receive small stipends for their work.  In addition, the agency recently streamlined its online disability application for people who have a condition on the Compassionate Allowances list.

Information about prior announcements may be found in the archives of out blog. For a complete list of all of the compassionate allowance conditions, please clickhere.

The Commissioner  announced in October 2008 the first list of 50 conditions which I reported here. In February 2012, the list was expanded with 38 additional conditions, which are reported here.

The 12 new heart conditions that qualify for Compassionate Allowances are:

Aortic Atresia

Left Ventricular Assist Device (LVAD) Recipient

Eisenmenger Syndrome

Mitral Valve Atresia

Endomyocardial Fibrosis

Primary Cardiac Amyloidosis

Heart Transplant Graft Failure

Pulmonary Atresia

Heart Transplant Wait List – 1A/1B

Single Ventricle

Hypoplastic Left Heart Syndrome

Tricuspid Atresia

If you suffer from any of the 100 conditions, when you apply, or if your case is currently being reviewed, you should point out your condition and that it is on the list of Compassionate Allowances Conditions.

Regenstrief Institute to help improve disability determination through health information technology

INDIANAPOLIS –- The Regenstrief Institute has been awarded a Recovery Act contract to help the U.S. Social Security Administration and Indiana healthcare providers shorten and improve the process of making disability case determinations through automation. Work is scheduled to begin March 31.

The process of acquiring medical information for an SSA disability claim involves numerous requests to multiple healthcare providers treating the individual seeking disability benefits. This process can take weeks or even months following an application for benefits. Physician offices, hospitals and others health care provider must gather the individual’s recent medical information and submit it via fax or U.S. mail.

The Regenstrief Institute, an international leader in heath information technology, created and operates the Indiana Network for Patient Care (INPC), a secure statewide health information exchange that providers use to help improve the quality, safety and efficiency of care that their patients receive. Improving the disability determination process complements other functions of the INPC, including surveillance for influenza outbreaks and access to a patient’s diverse medical records when providing emergency care.

“We will leverage the capability of the INPC to quickly and efficiently collect the information requested electronically by SSA, with the specific authorization of the person applying for disability benefits, and securely transfer it to the government so the disability decision process can be completed more rapidly. This will make that process more efficient – both because it will be faster and also because the medical data compiled will be more complete. It also will take the time and expense of going to many different providers, assembling the necessary records and filling out forms off the shoulders of patients and decrease the need for providers to search for and send records manually,” said Brian Dixon, MPA, project manager for Regenstrief’s SSA contract.

To effectively make decisions regarding applications for disability, the SSA needs the same kind of medical information that physicians utilize when making diagnoses, treatment, and referral decisions. Healthcare providers in Indiana rely on the INPC to securely and privately share clinical data which is utilized daily to support healthcare services throughout Indiana.

“Facilitating the processing of patients’ disability claims is another example of how healthcare providers throughout Indiana have worked together with the Regenstrief Institute and Indiana Health Information Exchange to ensure that their patients’ healthcare information is used to enhance their care,” said J. Marc Overhage, M.D., Ph.D., director of medical informatics at the Regenstrief Institute, Regenstrief Professor of Medicine at the Indiana University School of Medicine, and president and C.E.O. of the Indiana Health Information Exchange.

Disability benefits determination is a large-scale process. The SSA expects to receive more than 3.3 million disability benefits applications in fiscal year 2010, a 27 percent increase over the 2008 fiscal year. Annually, more than 15 million requests for medical records are sent to healthcare providers.

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.

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

Here is the list of the previously announced conditions.

Social Security divides medical sources into two categories: “acceptable medical sources” and other health care providers who are not “acceptable medical sources”. Nurse Practitioners are in the category of other health care providers who are not “acceptable medical sources”.

In Social Security Ruling 06-03, SSA explains that it makes the distinction for three  reasons: First, SSA needs evidence from “acceptable medical sources” to establish the existence of a medically determinable impairment. Second, only “acceptable medical sources” can give SSA medical opinions.  Third, only “acceptable medical sources” can be considered treating sources whose medical opinions may be entitled to controlling weight.

This means that the medical evidence from a Nurse Practitioner can not establish your medical impairment at Step 2 of the Sequential Evaluation. You must establish your medical impairment in order to win your benefits.

This means that if all of your treatment is by a Nurse Practitioner, then you have no one who can give SSA a medical opinion about how your medical impairments restrict what you can do.

In a card game, a King beats a Jack. Social Security does not even treat a Nurse Practitioner as a Jack–more like a low card. This is not good for your case!

On July 29,2009, 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, to hear 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. Early-onset Alzheimer’s and related dementia has not yet been added to the list.

Here is the list of the first 50 impairments — 25 rare diseases and 25 cancers included in Compassionate Allowances:

1. Acute Leukemia
2. Adrenal Cancer – with distant metastases or inoperable, unresectable or recurrent
3. Alexander Disease (ALX) – Neonatal and Infantile
4. Amyotrophic Lateral Sclerosis (ALS)
5. Anaplastic Adrenal Cancer – with distant metastases or inoperable, unresectable or recurrent
6. Astrocytoma – Grade III and IV
7. Bladder Cancer – with distant metastases or inoperable or unresectable
8. Bone Cancer – with distant metastases or inoperable or unresectable
9. Breast Cancer – with distant metastases or inoperable or unresectable
10. Canavan Disease (CD)
11. Cerebro Oculo Facio Skeletal (COFS) Syndrome
12. Chronic Myelogenous Leukemia (CML) – Blast Phase
13. Creutzfeldt-Jakob Disease (CJD) – Adult
14. Ependymoblastoma (Child Brain Tumor)
15. Esophageal Cancer
16. Farber’s Disease (FD) – Infantile
17. Friedreichs Ataxia (FRDA)
18. Frontotemporal Dementia (FTD), Picks Disease -Type A – Adult
19. Gallbladder Cancer
20. Gaucher Disease (GD) – Type 2
21. Glioblastoma Multiforme (Brain Tumor)
22. Head and Neck Cancers – with distant metastasis or inoperable or uresectable
23. Infantile Neuroaxonal Dystrophy (INAD)
24. Inflammatory Breast Cancer (IBC)
25. Kidney Cancer – inoperable or unresectable
26. Krabbe Disease (KD) – Infantile
27. Large Intestine Cancer – with distant metastasis or inoperable, unresectable or recurrent
28. Lesch-Nyhan Syndrome (LNS)
29. Liver Cancer
30. Mantle Cell Lymphoma (MCL)
31. Metachromatic Leukodystrophy (MLD) – Late Infantile
32. Niemann-Pick Disease (NPD) – Type A
33. Non-Small Cell Lung Cancer – with metastases to or beyond the hilar nodes or inoperable, unresectable or recurrent
34. Ornithine Transcarbamylase (OTC) Deficiency
35. Osteogenesis Imperfecta (OI) – Type II
36. Ovarian Cancer – with distant metastases or inoperable or unresectable
37. Pancreatic Cancer
38. Peritoneal Mesothelioma
39. Pleural Mesothelioma
40. Pompe Disease – Infantile
41. Rett (RTT) Syndrome
42. Salivary Tumors
43. Sandhoff Disease
44. Small Cell Cancer (of the Large Intestine, Ovary, Prostate, or Uterus)
45. Small Cell Lung Cancer
46. Small Intestine Cancer – with distant metastases or inoperable, unresectable or recurrent
47. Spinal Muscular Atrophy (SMA) – Types 0 And 1
48. Stomach Cancer – with distant metastases or inoperable, unresectable or recurrent
49. Thyroid Cancer
50. Ureter Cancer – with distant metastases or inoperable, unresectable or recurrent

“When talking with Social Security disability claimants, I often hear a statement like “I can’t work because I have been diagnosed with bipolar disorder” (or degenerative disc disease, or fibromyalgia). The claimant makes the statement like the matter is settled. The reasoning seems to be: since there is a doctor’s diagnosis of my impairment, my disability claim should be granted.

Unfortunately, that reasoning is not at all correct. It is not the diagnosis of the impairment but the severity of the impairment that matters in a Social Security disability claim. And I explain this to clients every day.

The diagnosis is just the beginning. A good beginning to be sure, since the diagnosis satisfies the medically determinable requirement in a Social Security disability claim. But the important thing is the severity of your impairment. How much does it affect your functionality? How does it affect your ability to work? These are the important questions in a Social Security disability case.

What is missing from almost every denied Social Security disability claim is evidence establishing a claimant’s functional limitations. A medical diagnosis alone does not establish any functional limitations. And unfortunately, a patient’s medical records usually have little information regarding functional limitations (medical records are created and maintained for medical providers to track a patient’s medical care, not to establish disability).

So remember, it’s not the diagnosis but the severity of the impairment that matters. And a Social Security disability lawyer spends a great deal of time trying to obtain evidence – often a medical source statement – that will establish a claimant’s functional limitations.”

I am in complete agreement with Mr. Gates observations. I have the same conversations with people all the time. I remind people that they need to tell the whole truth about their inability to work. You really do need to know the rules of Social Security disability.

“SSA is responsible for the Nation’s two primary Federal disability programs: Disability Insurance and Supplemental Security Income. Over the last 5 years, our disability workloads have grown significantly, and this trend will accelerate as baby boomers reach their most disability-prone years. We cannot lose sight of the fact that this longer-term increase in disability claims is coming, regardless of when the American economy begins to recover.

The time is now, despite the challenges of the economic downturn and the hearings backlog, to modernize the disability process to avoid future backlogs and provide applicants with speedy decisions. Technological improvements alone cannot remedy the issues in the disability process. We must revise the policy and medical guidance at the core of the program to align with medical technology and knowledge. A modernized disability process will help us to better serve the public and fulfill our obligation to provide a fair process to the American people. The following initiatives form the core of our disability modernization program in FY 2010:

Improve Occupational Information for Making Disability Determinations and Decisions

SSA is working on the development of a new occupational information system that will replace the out-of-date Dictionary of Occupational Titles (DOT) used in SSA’s disability determination process. The DOT was originally created by the Department of Labor (DOL) and has become a cornerstone of our disability policy. We rely on the descriptions of work in the DOT to determine whether individuals can do their usual work or any other work in the U.S. economy. However, DOL has not updated the DOT since 1991 and has no plans to do so. DOL’s replacement for the DOT, O*NET, does not serve SSA’s purposes. It is critical that we base disability determinations on current job information.

SSA awarded contracts in 2008 for the use and evaluation of updated occupational information. In December 2008, Commissioner Astrue established the Occupational Information Development Advisory Panel to provide advice and recommendations on plans to replace the DOT. The panel advises SSA on the creation of an occupational information system for disability programs and adjudicative needs. Specifically, the panel will advise on medical and vocational analysis, occupational analysis, data collection, use of occupational information, and other areas. The panel had its first meeting in February 2009 and has three more meetings scheduled this year.

SSA will continue its efforts to replace the DOT in FY 2010, when the agency will begin identifying the physical and mental abilities and skill levels that occupations require, developing the means of gathering occupational information, and researching assessment of residual functional capacity.

Update Medical Listings

SSA uses the Listings of Impairments to describe impairments considered severe enough to prevent an individual from working and earning above a defined level. The listings are a critical factor in our disability determination process; however, we have not updated some listings in decades. We are working to expand the listings to include rare disease and permanently disabling conditions. We are also working to update all of our existing listings by the end of FY 2010. We have also developed a long-term schedule to ensure that in the future we update all listings, as needed, but at least every 5-7 years. Updated listings allow disability examiners and SSA adjudicators to identify eligible applicants early in the disability determination process and result in improved disability decisions.”

All of this sounds good in the abstract. However, ONET was going to replace the DOT for disability hearings until it was determined it would not actually work in a disability hearing. Listings have been updated and some old listings have been completely removed because the listing was supposed to be covered by the new listing; however, the ALJ’s and Medical Experts do not always understand this. SAA has rolled out other plans that were supposed to help but only made things worse. Time will tell if these “improvements” actually improve things in the real world.

Just because your doctor told you six months ago that there was nothing more the doctor could do for you – this is as good as it gets – does not mean that you can stop going to the doctor. If you do not have medical records (that third party verification) for those six months, the judge can say that there is no proof that your medical condition did not improve during that time or that it stayed the same, therefore you have not proved that your medical condition prevented you from working those six months. This could result in a complete loss of benefits. If you have seen the doctor in that time, then the medical records can document that you did not improve. Also, the doctor may document some facts that the doctor did not previously document. These facts may be what convince the judge that you can not work.

Another problem is that most doctors do not put in their medical records that they told you that this is as good as it gets. When you tell the judge that is what the doctor says, there is no way to verify this in the medical records. In preparing your case to win, you must assume that without third party verification of what you say that the judge will not believe you. Otherwise you are gambling that maybe you will be lucky and the judge will believe you. Why would you want to gamble on winning when you can continue to see the doctor and generate the third party evidence (medical records) that will show what your medical condition was?