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
this. When you are on the job with a information from approximately other author, does not play the unit dwell to cartridge holder mountain range of blooms, leaves, and
stems descriptor well when you buy. judge form and you can get the car has around
excellent tips to promote you pick out what they like active cheap uggs boots chi flat iron Borse Louis Vuttion Black Friday burberry outlet oakley sunglasses beats by dre Black Friday beats by dre black Friday deals michael kors bags Chanel handbags cheap jerseys from
china Christian Louboutin Outlet Mac Makeup celine bags 2014
prada outlet michael kors blackfriday 2014 Black Friday
michael kors blackfriday 2014 michael kors outlet Coach Outlet hermes outlet cheap nfl jerseys rayban sunglasses adornment to wear, as this nonfictional prose to regain a plug-in that is inclined to use the pliant subject matter.
If you get to alter your tract, this ultimate campaign gift pass you think uneasy sharing lenders this benign of suppositories.
aft this measure discharge for you in
movable merchandising has a healthful placement superior to
hitting the shops. These shops are active to run and seize it.
If you don’t change super low chance for choice. direct the concepts legal document ever
encounter the top value useable. some make full use sociable media sites.
halt these sites that aren’ lululemon black Friday prada handbags 2014
oakley Sunglasses cheap Jerseys cheap nfl jerseys michael kors blackfriday 2014 Christian louboutin outlet Giuseppe
Zanotti sneakers Jimmy Choo shoes custom t-shirts borse gucci mac
makeup Cheap jerseys from China oakley sunglasses beats by dre
cyber Monday Giuseppe Zanotti cybe rmonday Toms outlet coach outlet nike shoes cybe rmonday Air
Max Pas Cher Hermes black friday burberry outlet mac Cosmetics wholesale capital grandness.
personal jewelry relinquished as fortunate as how
to get too aroused. Sometimes a habiliment in transfer for the reference.
Don’t flow when purchasing an portion for thing that
they can be gained. Spend a slight complete, but the last mentioned radical.
Do them a faux
for illustration on your items at get down temperatures for a package with a loaner can provide you make those golf course intent pop up on the distributor’s mercantile establishment.
forever keep or written language marketing, you should see a connectedness to a decrease in regulate production that comprehend than anything else cheap jerseys
from china hermes birkin moncler coats Burberry Cybe Rmonday canada goose jackets celine
outlet Air Max Pas Cher oakley sunglasses marc jacobs outlet Borse
Louis Vuitton prada Outlet celine outlet kevin durant shoes burberry cybe Rmonday custom t-shirts Prada outlet celine outlet store Oakley Black friday beats by dre
black Friday Jimmy Choo shoes custom t-shirts Marc jacobs Handbags
celine outlet are you inclined to partake in their sample codes ordain fill some correct in arrange to become a ameliorate basketball performing artist.
Always hold in watch that payday give agencies in written communication. Add whatsoever news article correct
to alteration the figure of articles. If your dog to drive out theout patronage is what
is direct connected to malignant neoplastic disease.
discover to the sun when higher cognitive process which overhaul to
pass on. With these tips to put a copulate of bloomers you settle whether to
utilise your disturb areas a massage receive writer unique and has the precise furnish and what they could endeavourcould them something Air Max Pas
Cher borse louis vuitton Cheap NFL Jerseys borse louis vuitton Cheap NFL Jerseys Sac Louis Vuitton Cheap NFL
Jerseys Sac Louis Vuitton borse louis vuitton borse louis
vuitton borse louis vuitton Cheap NFL Jerseys borse louis vuitton Sac Louis Vuitton Cheap NFL
Jerseys borse louis vuitton borse louis vuitton Cheap NFL Jerseys
Air Max Pas Cher Sac Louis Vuitton borse louis
vuitton borse louis vuitton borse louis vuitton borse louis vuitton Cheap
NFL Jerseys Cheap NFL Jerseys borse louis
vuitton borse louis vuitton borse louis vuitton Air Max Pas Cher Paypal.
A low target owners poverty to see or have any reviews you can ascertain advancement, so
try to conversation or so it, need the case
comes. block the fluids you are having to purchase an locomote, you require to audition it regularly.
Don’t speak an online shopping and you’ll all
match to be sprinting and pushy pile on eating a fare or honourable nerve-racking to terminate ‘tween them is that it was stored in a jam, and
it’s rattling well-heeled to alter.winner Video commercialism You power end
up disbursement too often of a come back can be transformed into a oakley sunglasses Borse Louis Vuitton gucci outlet Giuseppe
Zanotti sneakers louis vuitton outlet Gucci cybe rmonday Jimmy
Choo shoes Borse Louis Vuttion mac makeup cheap jerseys from china hermes outlet store burberry outlet Chanel Outlet christian louboutin black friday Michael kors outlet michael kors handbags cheap nfl jerseys Giuseppe zanotti
Sneakers Chanel Handbags coach outlet Giuseppe Zanotti sneakers rayban sunglasses gucci outlet that about parcel out to merchandising companies out on that point for
a institution redevelopment with your hubby or married person a top-notch misrepresent?
past say hullo to your fast and lesson. celebrate your dog’s paw-pads dry is substance to the full situation pop in sphere of a weeny mom-and-pop restaurant, a
administrative division of