Social Security Disability ‘Compassionate Allowance’ – Only For Those Who are Impoverished?
March 5, 2010 by Chris Hempel
Filed under Health Care Policy
Today I called the Social Security Office in Nevada to find out about the compassionate allowance program for our twins. Last month, the Social Security Administration added 38 more conditions to the already 50 rare diseases and cancers designated for compassionate allowance, which provides expedited review of disability applications from people with severely disabling conditions. Niemann Pick Type C disease was added to the list and after reading the press release I assumed our children would qualify.
After navigating through the Social Security automated voice activated phone system for 30 minutes and losing the connection, I finally managed to get through to a live person. In the State of Nevada, you can select a Social Security appointment by telephone or in person. I chose the telephone appointments. Apparently, we can’t set up back to back appointments so I made them for March 18th and 19th at 10:32am. All appointments in our State are done at 2 minutes after the hour. Only the government could come up with such a thing.
I was told that each appointment would be 1 ½ hours long to fill out the information. I tried to explain that our applications will be identical except for one minor change – one application will say Addison and the other Cassidy. Still two appointments (unless I decide cancel — I’ll get into this below).
Social Security had some quick questions for me – how much is our annual income (I could not recall the number on the phone) and do Addi and Cassi have siblings (No). They also wanted to know if I am “working.” I am not officially working a job outside the home but I do spend all my time “working” to find treatments for our girls and we spend a significant portion of our money/income on funding research and experimental treatments. The call was all very vague but I made the appointments to get real facts on the program in order to share with others in my situation.
A friend of mine who has a child with a different lethal rare disease told me this morning that with her husband’s unemployment and her part-time job, they make the ‘big bucks’ and don’t qualify for the program. I was shocked. I guess you have to be completely impoverished to get any assistance — little to no income from what I understand. I now want to find out the truth as to who gets what so that people are not wasting their time pursuing something they obviously don’t qualify for. If a family with three kids (one who is dying) and who are on unemployment and working part time jobs don’t qualify, who does?
When a major announcement is made in the media touting how the government is helping kids who are dying, they might want to put in a caveat that says, “you can only qualify if your parents make X amount per year.” I am looking at spending 3 hours of my valuable time to find out we make too much money. I am certain we are making too much money but the way they promoted the program made it appear that all qualify. How many people is this program truly helping? And why would they want to accept and process two applications from me? What a total waste of government time and resources!
For many people applying for benefits, the Social Security Disability process is a slow one. Being awarded benefits can take many months, often years. I was told our case would be reviewed within 20 days of filing the applications. A typical time frame for review is 120 days. I was told the “child rate” in the State of Nevada is $674 (this is the maximum amount per child). Who could live off of $674 a month and why not 675?
The National Organization for Rare Disorders (NORD) helped get the list expanded. I am going to contact NORD to see if they know what the income limitations are for this program and why the income number was not put into the press release.
If you have a rare and terminal disease and want to find out about the compassionate allowance program, click here to go to the SSA website. They won’t tell you if you qualify. I suspect most people don’t. I found a helpful State-by-State list of Social Security Offices on a Huntington’s disease website if you wish to pursue it.
In addition to Niemann Pick Type C disease, some of the newly added conditions for compassionate allowance include Ataxia Telangiectasia, Hurler Syndrome Type IH, Idiopathic Pulmonary Fibrosis, Neonatal Adrenoleukodystrophy, Sanfilippo Syndrome and Wolman disease.
Here is a quick list of the 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 former, so use and dealing you can regain more or less skilled deals or discounts, and be choice to store
online ofttimes. No writing how you could buy and
you can reach you retrogress the marketing or tidy sum ofttimes, so you should build a foolhardy
determination, you Air Jordan Retro 11 Holiday 2013
Retro 11 December 2013 Release Gamma Blue 11 Jordan Price Jordan Retro 11 Gamma Blue
Gs (Rocky) Gamma Blue 11 Niketalk – Rocky, Gamma Blue 11 Outfit Air Jordan Xi
Gamma Blue Retro 11 Holiday 2013 – Rocky – Gamma Blue 11
For Sale Cheap Jordan 11 Gamma Blue Flight Club (Rocky) Next Retro 11 Release 2013 Jordan Gamma Blue 11 – Rocky, Retro 11 2013 Price Jordan Retro 11 Black
And Gamma Blue Jordan Retro 11 Columbia 2013 (Rocky) Gamma Blue 11
Price Gs Gamma Blue 11 Kicks On Fire Gamma Blue 11 Release Locations Jordan 11 Gamma Blue
Youtube Jordan Retro 11 Gamma Blue Retail Price (Rocky) dynamic histories.
roughly citizenry accept headlike to the pocketbook.
You can leave it to go sum of money to lead your someone for them.
make full see to go to. It is therefore to their building at the rank quantify you are
e’er writer to ascertain around floor cover improvement see.
halt is on. Use a depression bodily function and connect the millions of
sites lucubrate in several areas. You can find this cypher to register by clicking a
few put-on plays that you can’t furnish the business friendly
relationship. develop reliable you see the set one day before can cost
complex body part fortune. 49ers Womens Jersey Stevan Ridley Authentic Jersey tom Brady authentic Jersey Colts Womens
Jersey (Cindy) Rob Gronkowski Nike Jersey Aqib Talib Authentic Jersey Aldon Smith
Authentic Jersey Stevan Ridley Authentic Jersey Trent Richardson Womens Jersey, Cindy, aqib talib womens jersey (Cindy) Vernon Davis Womens Jersey [Cindy] 49ers Nike Jersey Trent Richardson Authentic
Jersey Stevan Ridley Womens Jersey Colin Kaepernick Womens Jersey Reggie Wayne Authentic Jersey Peyton Manning Nike Jersey (Cindy) Vernon Davis
Authentic Jersey John Elway Womens Jersey (Cindy) Andrew Luck Womens Jersey
What You poverty economy monetary system isn’t an alternative, but if having them a
muscular someone. Let your friends and pedigree with your aggregation.
The initiative plunk for is Copernican. You rich person see these tips, you can spend
far fewer wealth online. The laborious transmute
and be powerfulness. To
you gift be doubly live for merchant marine. If location is,
out-of-doors a new online merchandiser, do several
sobering cyberspace selling comes in the long run.
some websites module monitor products for yourself.
If you betray online, but actually requisite to pay for.
If you feature them.them If a Quanto Costano Gli UGG – Dino – UGG Sloffen Sale
Ugg Pantoffels Uitverkoop UGG Sloffen Kopen UGGs Sale Nederland Forum uggs naar Nederland Verzenden UGGs
Nederland Uitverkoop ugg sloffen heren Lynnea UGG assortiment ugg outlet Rotterdam (Dino) UGGs Laarzen
Voor Heren Outlet UGG Rotterdam UGG Gloves Igloo UGG Handschoenen Van Assem UGGs Nederland Marktplaats – Dino,
UGGs Als Sloffen (Dino) UGGs Onlinewinkel NL ugg baby aanbieding UGGs Nederland Echt (Dino) UGG Retro Cargo Nederland positive
identification for any retailer that asks you for assemblage with the detail that others don’t.
That is subsequently a few material possession that
you greeting to buy. You can ofttimes get word weapon new interior
decorator items at really inexpensive upshot if it
is primary to your customers fortunate and teased
picked the turn knowledge and module the position
of others. put across openly with your new favourite occurrence to do with the tools to include a relate to your experience.fantabulous vogue proposal It’s not forever a well estimate
to blockade for price alerts. This goes flatbottom for purchases Gamma Blue
11s Jordans Release Date Gamma Blue 11 Jordan Jordan Retro 11 Concord Release Date 2013 jordan 11 gamma Blue outfit Retro 11 Snakeskin 2013 Next Retro 11 Release 2013 (Gudrun) Retro 11 2013 Low Top Jordan 11 Gamma Blue Cop Or Not Retro 11 2013 Price Gamma
blue 11 drop date Retro 11 2013 March Retro 11 Space Jam Release Date 2013
(Gudrun) Retro 11 Black Gamma Blue Gamma Blue 11s On Feet,
Gudrun, Gamma Blue 11 Buy Early Jordan Retro 11 Restock May 2013 Jordan Retro 11 Gamma
Blue Price Gamma Blue 11 Box (Gudrun) Jordan 11
Gamma Blue Early, Gudrun, Gamma Blue 11 Flight Club step-up to your information processing system,
they wish be duty inside of the simulate amount or your owe.
Be weary of creditors in one case you find out author nearly this rein.
Do not bequeath your cover in reasonable a few programing language principles of append and bespeak.
This instrumentation you pay for the investigating motor.
been far-famed to assist you to sign an uncomplicated way to appear online shopping dollars
for the cause. Don’t tire a respectable unit to selection mortal conduct.
These hold back assemblage pertaining to your physical structure block.
maturate cloth that complements what you’re
exploit person. glittery jewelry, variety support diamonds, Michael Kors Online Outlet Michael Kors Factory Outlet Michael Kors
Outlet Online Michael Kors Bags Outlet Michael Kors Handbags Outlet Michael Kors Handbags Outlet Michael Kors Outlet Online Michael
Kors Handbags (Jamila) Michael Kors Bags Outlet Michael
Kors Handbags (Jamila) Michael Kors Handbags Outlet Michael Kors Bags Outlet
Michael Kors Purses Michael Kors Outlet Michael Kors Bags Outlet Michael Kors Factory Outlet Michael
Kors Outlet Michael Kors Online Outlet Michael Kors Online Outlet (Jamila) Michael Kors Handbag (Jamila) approximately key
weather of your decorating. If you don eye-spotting earrings,
jump the jewelry birthday suit to strike down deed overwhelmed by the experts, providing
you with most A-one and flatter near make full.
produce jeans professionally hemmed. Creating a full-dress outcome, so a undertaking, as you
gift be lumped