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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.

“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.

The bad news is that the wait is still over two years long from the Request for Hearing. It is important that you keep seeing your doctor during your long wait so that your medical condition will be documented.

Most people tell me that they have heard that ‘everyone gets turned down twice,’ but they always think it will not happen to them. With odds like these, year after year, you have to know the rules . You need to know when to hire an attorney to represent you.

In January of 1968, in the second season of Star Trek, Captain James T. Kirk invites the mobster Jojo Krako to play a card game of Fizzbin. Krako, who plays a lot of card games, accepts even though he does not know the rules. Kirk deals the cards. Kirk and Spock then begin to turn over the cards of Krako’s hand. His hand reveals face cards (King, Queen, Jack). Krako is excited as he says he has a good hand. Kirk then tells him that in Fizzbin a King is bad, a Queen is bad, and a Jack is bad. In fact, Kirk says, Kirk’s hand of  low cards is the winner and Krako has lost. When I saw the program, it was obvious to me that Kirk was making up the rules as he went. There was no way that Krako could win because he did not know the rules. If you want to purchase the DVD so you can see the whole episode, click here Star Trek DVD

Many claimants go about their Social Security Disability claim in the same manner. They do not know the rules and believe anything that anyone at Social Security says. If someone from the Disability Determination Bureau says that you have to go to an examination by one of their doctors, how do you know any different?

Other times a claimant is like Jojo Krako because something in the process is so familiar that they do not question it–they do  not realize that under the rules of this game, a King is not a good thing to have. A good attorney who has had years of experience dealing with Social Security will be able to tell you the rules and warn you ahead of time about them so that you can make the best presentation of your case.

Do you know all the rules of Social Security Disability? How big of a gambler are you with your case?