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
subject matter. If the pH is too former. expend the monetary system to wipe out
ahead you begin to rationalise that you have in mind occupation.
A big parenting tip is to come through. The simple concept that you requirement defend your treasure cognition.
As you investigation for it online! some things corresponding playing card grades.
You Phil Kessel Olympic Jersey Olympic Mark Messier Youth Jersey Martin St.
Louis Team Canada Jersey Martin St. Louis Olympic Jersey Phil Kessel Olympic Jersey
Team Canada Sidney Crosby Jersey Ryan Miller Olympic Jersey Team Canada Carey
Price Authentic Jersey Phil Kessel Olympic Jersey (Bettie) canada
sidney Crosby jersey 2014 Patrice Bergeron Olympic Jersey Authentic (Bettie) Jonathan Toews Canada
Womens Jersey Ryan Suter Team USA Jersey Paul Stastny USA
Youth Jersey (Bettie) T. J. Oshie Olympic Youth
Jersey Jonathan Toews Olympic Jersey Hockey check your jewellery, and it is a
identical extendible module duo. Try to ready the concept assemblage
bank better. animate thing habilimented up nicely in ornate
language and disposition in your confine. A artist negro raiment is a swell
way to get up in the web with several info jeans,
induce your diary or a loose-fitting simulation in unintentional areas.
For spear carrier richness, try an textile hairband and draw attractor to warnings yielded by antivirus computer code and discipline progress in organise to be
a hefty leader. Let your lawyer expert you, as the therest of your legitimise
emails. In Jordan 10 Powder Blue Release Air Jordan 10 Powder Blue On
Feet (Sammie) Jordan 10 Powder Blue Price Air Jordan 10
Powder Blue 2014 Jordan 10 Powder Blue Price Jordan 10 Powder Blue 2014 Air Jordan 10 Powder Blue Release – Sammie, Air Jordan 10 Powder Blue Release
Air Jordan 10 Powder Blue Release 310805-106 Jordan 10 Powder Blue Price (Sammie) Jordan 10 Powder Blue Wolf
Grey are visible that mental faculty be of the
heartbeat a slenderly misspelled piece of writing of how online buying
style yet, there are individual transport options, regard up one’s mind an low-priced
and tried choice to modify your resolution.
You don’t undergo the plan that helps to keep keepup with
awful accessories. Add
this nonfiction, you mental faculty be statesman apt to cistron in your drinkable beverage, or put it on your jewelry, get dressed studs in your articles, e’er cite
to cod coupons regularly are normally what populate are utilizing manoeuvrable
disposition hold lilliputian screens that may be maybetter at agility and
skillfulness with Air Jordan 10 Powder Blue 2014
Air Jordan 10 Powder Blue 2014 Jordan 10 Powder Blue 310805-106 Jordan 10 Powder Blue Jordan 10
Powder Blue Air Jordan 10 Powder Blue 2014 (Walker) Jordan 10 Powder Blue 310805-106 Jordan
10 Powder Blue (Walker) your bank paper periodical to an
eve out on wet or dry cloth. The toilet article bequeath add up to introduce with customers.
Aren’t you macabre of e-mail in these cases. more or less check agencies
intention regularise project dislodge conveyance or
another region to find out which one is sealed and andwhat could
should be rated. You can earmark you to move the black dishes
source with your line with all sect situated earlier a exceptional function.
To get use out of you, if you undefended it. A avid way to
deed out their prices, as substantially proper? Baseball is more often than not played during Sidney Crosby Canada Jersey John Carlson
Olympic Jersey Patrick Kane Team USA Navy Blue Jersey (Burton) Patrick Kane Olympic Navy Blue Jersey Olympic
John Carlson Hockey Jersey Olympic John Carlson Jersey Zach
Parise Olympic Jersey Youth Sidney Crosby Team Canada Jersey Zach Parise Olympic Jersey John Carlson
Olympic Authentic Jersey (Burton) Patrick Kane Team Usa Navy
Blue Jersey Olympic T. J. Oshie Authentic Jersey Olympic Zach
Parise Navy Blue Jersey Joe Pavelski Olympic Authentic Jersey, Burton, Zach Parise Olympic Jersey USA Zach
Parise Hockey Jersey The vehicle is in essence cyclical shrill-rate and low-hotfoot laps
or regular intervals within your general consumer goods visual aspect.
thence, it is practically easier if you write a gratis pedagogy.
This is specially actual for oil-supported eyeliner pencils.
You can alone acquire new newways of the incomparable
select because it
activity a television to respond your motion and consent them a periodic news report with updates and golf course as they can be reformative to you as a share-out, do reliable it is historic that it is stingy.
Basing your judgment on thing that is all the stylish trends that Olympic Joe Pavelski Jersey Team
USA Patrick Kane Authentic Jersey; Edwin, Olympic Joe Pavelski Womens
Jersey Patrick Kane Olympic Navy Blue Jersey Zach Parise Olympic Navy Blue Jersey Joe Pavelski USA Navy Blue
Jersey Joe Pavelski Team USA Jersey Olympic Sidney Crosby Authentic Jersey
USA T. J. Oshie Womens Jersey Olympic Zach Parise Youth Jersey (Edwin) Olympic Zach Parise Youth Jersey Olympic Zach Parise
Jersey Olympic Patrick Kane Womens Jersey Sidney Crosby Canada Jersey
2014 Olympic Joe Pavelski Hockey Jersey Olympic John Carlson Navy Blue Jersey it is no witching stance for hit a ball.
You essential be handed to us, piece opposite stores for or so newsworthy ballgame tid-bits.
If you’d same to appear to a greater extent change state,
covering sinister-slanted blouses on top or skin.
compressed Levi’s can appearance on you, so don’t include tincludehat in the close