Idiopathic Pulmonary Fibrosis added to social security's list of compassionate allowance conditions and what it could mean for those with HPS
The Social Security Administration has added 38 new diseases and disorders that are considered to be so severe that they require immediate processing of social security applications.
The world of social security is very confusing. I want to start out that I am not an attorney - just a consumer who spent the last year working my way through the system to get social security disability income or SSDI.
Adding Idiopathic Pulmonary Fibrosis to the list of disorders is a step in the right direction as typically, the life span from diagnosis to death is typically 3 to 5 years. To spend as much as two of those years in limbo with social security was a huge problem for many patients. For those of us with Hermansky-Pudlak Syndrome, however, I think the impact of this new rule will be slightly different. For starters, many of us get a diagnosis of pulmonary fibrosis and live much longer than this. It isn't necessarily because our disease process is in any way less severe - it's just because those of us that know we have a type of HPS that causes pulmonary fibrosis get tested regularly, and thus get a diagnosis much earlier than the average patient. (Only if we know we have HPS, and that's a whole other issue.)
From this standpoint, it's important to understand what the new rule does and doesn't say. It doesn't say anyone with idiopathic PF on their medical record will automatically get benefits. It just means that your application will be picked up electronically and reviewed more quickly. In effect, you're getting pushed to the front of the line - and that's great because it can be one long line! Social security has specific guidelines about how impaired lungs must be before they are considered so sick that they cause disability according to social security. You can find those exact criteria (scroll down to the charts) at: http://www.ssa.gov/disability/professionals/bluebook/3.00-Respiratory-Adult.htm
I can tell you from personal experience, you can feel sick way before you hit these numbers. It doesn't mean that you might not feel disabled even if you're not at this stage yet - it's only a government definition. It is then up to you, and your lawyer if you're working with one - to include any other factors that would have a bearing on your case.
I would still strongly urge anyone with HPS who is legally blind to continue to use legally blind as their primary disability when applying to social security. Even if you don't feel your vision is your primary medical condition, this is still a better option. The reason is HPSers are more likely to hit the numbers for legal blindness as the vision is an issue from birth. Second, defining who is legally blind is a much more cut and dry thing for social security and the legal system. Either you fall under 20/200 or you don't. It's very cut and dry - and if you hit legal blindness then anything else you list on the application is just gravy. It really doesn't matter if your colitis is severe enough, or your lungs bad enough etc.
Another reason is that if you qualify under legal blindness, the government is operating under the assumption that this isn't going to change (usually doesn't) and thus you are eligible to earn more income on the side if you are able to at least work a little part time.
This new rule will have the greatest impact on those HPS'ers who have impaired vision, but who do not qualify as legally blind. If you can't hit those numbers, then you have to qualify based on your other medical conditions. This is harder as it's harder for a judge to determine just how your other issues are impairing you to the point of being unable to work.
Now those folks, should their lungs become very sick, can look at the lung criteria and determine if they can apply. If they can, then their application will go through more quickly.
Here's the tricky catch.
The other patient advocacy groups that work on issues of pulmonary fibrosis tend to continue to use the term "idiopathic" as though it were part of the disease name. All that word means is "cause unknown." Just because those of us with HPS know the cause of our pulmonary fibrosis doesn't make it somehow "lesser" pulmonary fibrosis.
Unfortunately, when it comes to these big government processes, you just never know who is reviewing your application and how on the ball they will be? Will they know what idiopathic means? Will they understand PF is PF?
During my year-long process of getting SSDI, I was asked by a medical examiner when my congenital visual disability started. So, you can understand my cause for worry.
If you must qualify for SSDI under this rule change, it will be very important that you and your doctor communicate well and are very savvy about how to fill out the paperwork. If they are willing, use the term idiopathic, even though technically PF of HPS isn't. Or compromise by putting down pulmonary fibrosis and leaving it at that.
Here's the press release from the National Organization of Rare Disorders.
NORD Press Release!
Date: February 11, 2010
For Release: Immediately
Headline: Social Security Announces 38 Additional Compassionate Allowance Conditions
Social Security Commissioner Michael Astrue announced this morning the expansion of Social Security's "Compassionate Allowances" program, which provides expedited review of disability applications from people with severely disabling conditions. The announcement was made in a press release. Originally, a press conference had been scheduled for today, and NORD President and CEO Peter L. Saltonstall was to have joined Mr. Astrue at the podium. However, the press conference was canceled because of the recent snowstorms in Washington DC.
The Compassionate Allowances program, launched under Mr. Astrue's leadership in 2008, began with a list of 50 diseases, including 25 rare diseases and 25 cancers. This is the first expansion of the disease list. The Social Security Administration (SSA) selected the 38 diseases from ones recommended during public hearings and a process of information-gathering. NORD's Medical Advisory Committee provided input to SSA during this process, as did medical experts from the National Institutes of Health and other organizations. Mr. Astrue has noted that he and his staff intend to continue to identify additional conditions that should be added to the Compassionate Allowances list. The following is the press release sent out by SSA just minutes ago:
Social Security Adds 38 New
Compassionate Allowance Conditions
Expansion Will Speed Benefits to Thousands of Americans with Disabilities
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 targeting these 38 new conditions March 1. For more information about the agency’s Compassionate Allowances initiative, go to www.socialsecurity.gov/compassionateallowances .
###
New Compassionate Allowance Conditions
Alstrom Syndrome
Amegakaryocytic Thrombocytopenia
Ataxia Spinocerebellar
Ataxia Telangiectasia
Batten Disease
Bilateral Retinoblastoma
Cri du Chat Syndrome
Degos Disease
Early-Onset Alzheimer’s Disease
Edwards Syndrome
Fibrodysplasia Ossificans Progressiva
Fukuyama Congenital Muscular Dystrophy
Glutaric Acidemia Type II
Hemophagocytic Lymphohistiocytosis (HLH), Familial Type
Hurler Syndrome, Type IH
Hunter Syndrome, Type II
Idiopathic Pulmonary Fibrosis
Junctional Epidermolysis Bullosa, Lethal Type
Late Infantile Neuronal Ceroid Lipofuscinoses
Leigh’s Disease
Maple Syrup Urine Disease
Merosin Deficient Congenital Muscular Dystrophy
Mixed Dementia
Mucosal Malignant Melanoma
Neonatal Adrenoleukodystrophy
Neuronal Ceroid Lipofuscinoses, Infantile Type
Niemann-Pick Type C
Patau Syndrome
Primary Progressive Aphasia
Progressive Multifocal Leukoencephalopathy
Sanfilippo Syndrome
Subacute Sclerosis Panencephalitis
Tay Sachs Disease
Thanatophoric Dysplasia, Type 1
Ullrich Congenital Muscular Dystrophy
Walker Warburg Syndrome
Wolman Disease
Zellweger Syndrome
The world of social security is very confusing. I want to start out that I am not an attorney - just a consumer who spent the last year working my way through the system to get social security disability income or SSDI.
Adding Idiopathic Pulmonary Fibrosis to the list of disorders is a step in the right direction as typically, the life span from diagnosis to death is typically 3 to 5 years. To spend as much as two of those years in limbo with social security was a huge problem for many patients. For those of us with Hermansky-Pudlak Syndrome, however, I think the impact of this new rule will be slightly different. For starters, many of us get a diagnosis of pulmonary fibrosis and live much longer than this. It isn't necessarily because our disease process is in any way less severe - it's just because those of us that know we have a type of HPS that causes pulmonary fibrosis get tested regularly, and thus get a diagnosis much earlier than the average patient. (Only if we know we have HPS, and that's a whole other issue.)
From this standpoint, it's important to understand what the new rule does and doesn't say. It doesn't say anyone with idiopathic PF on their medical record will automatically get benefits. It just means that your application will be picked up electronically and reviewed more quickly. In effect, you're getting pushed to the front of the line - and that's great because it can be one long line! Social security has specific guidelines about how impaired lungs must be before they are considered so sick that they cause disability according to social security. You can find those exact criteria (scroll down to the charts) at: http://www.ssa.gov/disability/professionals/bluebook/3.00-Respiratory-Adult.htm
I can tell you from personal experience, you can feel sick way before you hit these numbers. It doesn't mean that you might not feel disabled even if you're not at this stage yet - it's only a government definition. It is then up to you, and your lawyer if you're working with one - to include any other factors that would have a bearing on your case.
I would still strongly urge anyone with HPS who is legally blind to continue to use legally blind as their primary disability when applying to social security. Even if you don't feel your vision is your primary medical condition, this is still a better option. The reason is HPSers are more likely to hit the numbers for legal blindness as the vision is an issue from birth. Second, defining who is legally blind is a much more cut and dry thing for social security and the legal system. Either you fall under 20/200 or you don't. It's very cut and dry - and if you hit legal blindness then anything else you list on the application is just gravy. It really doesn't matter if your colitis is severe enough, or your lungs bad enough etc.
Another reason is that if you qualify under legal blindness, the government is operating under the assumption that this isn't going to change (usually doesn't) and thus you are eligible to earn more income on the side if you are able to at least work a little part time.
This new rule will have the greatest impact on those HPS'ers who have impaired vision, but who do not qualify as legally blind. If you can't hit those numbers, then you have to qualify based on your other medical conditions. This is harder as it's harder for a judge to determine just how your other issues are impairing you to the point of being unable to work.
Now those folks, should their lungs become very sick, can look at the lung criteria and determine if they can apply. If they can, then their application will go through more quickly.
Here's the tricky catch.
The other patient advocacy groups that work on issues of pulmonary fibrosis tend to continue to use the term "idiopathic" as though it were part of the disease name. All that word means is "cause unknown." Just because those of us with HPS know the cause of our pulmonary fibrosis doesn't make it somehow "lesser" pulmonary fibrosis.
Unfortunately, when it comes to these big government processes, you just never know who is reviewing your application and how on the ball they will be? Will they know what idiopathic means? Will they understand PF is PF?
During my year-long process of getting SSDI, I was asked by a medical examiner when my congenital visual disability started. So, you can understand my cause for worry.
If you must qualify for SSDI under this rule change, it will be very important that you and your doctor communicate well and are very savvy about how to fill out the paperwork. If they are willing, use the term idiopathic, even though technically PF of HPS isn't. Or compromise by putting down pulmonary fibrosis and leaving it at that.
Here's the press release from the National Organization of Rare Disorders.
NORD Press Release!
Date: February 11, 2010
For Release: Immediately
Headline: Social Security Announces 38 Additional Compassionate Allowance Conditions
Social Security Commissioner Michael Astrue announced this morning the expansion of Social Security's "Compassionate Allowances" program, which provides expedited review of disability applications from people with severely disabling conditions. The announcement was made in a press release. Originally, a press conference had been scheduled for today, and NORD President and CEO Peter L. Saltonstall was to have joined Mr. Astrue at the podium. However, the press conference was canceled because of the recent snowstorms in Washington DC.
The Compassionate Allowances program, launched under Mr. Astrue's leadership in 2008, began with a list of 50 diseases, including 25 rare diseases and 25 cancers. This is the first expansion of the disease list. The Social Security Administration (SSA) selected the 38 diseases from ones recommended during public hearings and a process of information-gathering. NORD's Medical Advisory Committee provided input to SSA during this process, as did medical experts from the National Institutes of Health and other organizations. Mr. Astrue has noted that he and his staff intend to continue to identify additional conditions that should be added to the Compassionate Allowances list. The following is the press release sent out by SSA just minutes ago:
Social Security Adds 38 New
Compassionate Allowance Conditions
Expansion Will Speed Benefits to Thousands of Americans with Disabilities
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 targeting these 38 new conditions March 1. For more information about the agency’s Compassionate Allowances initiative, go to www.socialsecurity.gov/compassionateallowances .
###
New Compassionate Allowance Conditions
Alstrom Syndrome
Amegakaryocytic Thrombocytopenia
Ataxia Spinocerebellar
Ataxia Telangiectasia
Batten Disease
Bilateral Retinoblastoma
Cri du Chat Syndrome
Degos Disease
Early-Onset Alzheimer’s Disease
Edwards Syndrome
Fibrodysplasia Ossificans Progressiva
Fukuyama Congenital Muscular Dystrophy
Glutaric Acidemia Type II
Hemophagocytic Lymphohistiocytosis (HLH), Familial Type
Hurler Syndrome, Type IH
Hunter Syndrome, Type II
Idiopathic Pulmonary Fibrosis
Junctional Epidermolysis Bullosa, Lethal Type
Late Infantile Neuronal Ceroid Lipofuscinoses
Leigh’s Disease
Maple Syrup Urine Disease
Merosin Deficient Congenital Muscular Dystrophy
Mixed Dementia
Mucosal Malignant Melanoma
Neonatal Adrenoleukodystrophy
Neuronal Ceroid Lipofuscinoses, Infantile Type
Niemann-Pick Type C
Patau Syndrome
Primary Progressive Aphasia
Progressive Multifocal Leukoencephalopathy
Sanfilippo Syndrome
Subacute Sclerosis Panencephalitis
Tay Sachs Disease
Thanatophoric Dysplasia, Type 1
Ullrich Congenital Muscular Dystrophy
Walker Warburg Syndrome
Wolman Disease
Zellweger Syndrome
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