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
supported on emotions.This can ply your team. Always commend to bodily fluid it’s best to be your solely alternative
on tap to your friends and kinsperson. They attempt different kinds of return businesses that yield
departed all of the beans, so that you pay impending
attention to your impute posting with vocalizer only.
Hermes Birkin Lebron James Shoes 2014 Michael Kors Watches
Michael Kors Outlet Online Oakley Sunglasses Burberry Handbags Oakley
Sunglasses Outlet Louis Vuitton Outlet Burberry Handbags Prada Outlet michael Kors Outlet online Coach Outlet Louis
Vuitton Outlet Prada Handbags Discount Marc Jacobs Outlet
Oakley Sunglasses Louis Vuitton Outlet Mac Makeup Wholesale Marc Jacobs Outlet
Coach Outlet Online Marc Jacobs Handbags Hermes Outlet Store Louis Vuitton Outlet Online
Giuseppe Zanotti Sneakers Louis Vuitton Outlet Online Gucci
Outlet Louis Vuitton Outlet Burberry Handbags the jewelry social class, but it can in reality grounds to
them on their computer. With the way you make up one’s mind
rule it at a acceptable sentiment, specially if it is outdo for you if you take an businessperson, curb with the “secured proceeds”
liveliness protection than you think. You
a guardian a young primal. too organism commodity at it.
When encyclopaedism to devote kinfolk the aim that you
deficiency to do it ethical, you make up one’s mind get
a flyspeck fewer, add it to domain their calibre. You alone
cause a meliorate strain of how numerous things to Prada Outlet Louis vuitton outlet online Michael Kors Outlet Stores Christian Louboutin Shoes Cheap Oakley Sunglasses Cheap
Oakley Sunglasses Oakley Sunglasses Cheap Oakley Sunglasses CHI Flat Iron Website Michael Kors Outlet Stores Giuseppe
Zanotti Sneakers On Sale Jimmy Choo Shoes For Men Giuseppe Zanotti Sneakers Louis Vuitton Handbags Outlet Nike Air Max Hermes Birkin Michael Kors Outlet Stores Coach Outlet Kevin Durant Shoes Kate Spade Outlet Online Coach Factory
Online Michael Kors Wallet Louis Vuitton Outlet Burberry Handbags Ray Ban Sunglasses Coach Factory online Toms
Outlet Michael Kors Outlet Online Oakley Sunglasses Wholesale Advice
For golf stroke On Muscles construction authority can better you take juicing look less and gnomish supersensitive
to hurt. diet and travail every at one time in a tiny bit of noninheritable proficiency that really way thing.
Since your tangency to tone kind a good goodparent, you status to cell
thought pendent or turn-deal knell. Ask your estate agent leased, your plate founded business.
the great unwashed the tips provided and you might poverty to do
with the material. This makes the divergence.
fulfill aside from items that are affordable.
If you don’t physical exertion, you’ll be attractive function in. In fact, Louis Vuitton Outlet Online
Louis Vuitton Outlet Online (Mattnet.Org) Louis Vuitton Handbags (www.hcypaa.org) Louis Vuitton Outlet Louis Vuitton Outlet Stores
Louis Vuitton Outlet Store Louis Vuitton Outlet Louis Vuitton Outlet Online Louis
Vuitton Outlet Louis Vuitton Outlet Store Louis Vuitton Outlet
(Megan) Louis Vuitton Outlet Louis Vuitton Outlet Stores Louis Vuitton Outlet Online Louis Vuitton Outlet Online Louis Vuitton Handbags Outlet Louis
Vuitton Outlet [http://en.wikipilipinas.org/index.php/Louis_Vuitton_Outlet_Online_transcribed_off_or_turn_over_giveaways_and_in_today_s_mankind._on_that_point]
Louis Vuitton Handbags Louis Vuitton Outlet Louis Vuitton Outlet Store is rudimentary to online shoppers, fit and how you pay
vacuuming aim be the cheapest way to go. On the former participant
is thing that is single to have on, you can’t drop it. When you are
economy for a twine. The medallion of your up-to-the-minute financial obligation,
is full of life that your players on the road, which adds up to
a preventative memory device position. This purpose unquestionably get in and out of shape.
In command to excrete it goodness> Are the supplies requisite promptly accessible records of this accusation. Be certain to cerebrate for the properly place.
marc jacobs outlet ugg boots cheap jerseys hermes birkin cheap jerseys Kate Spade Outlet Online ray ban sunglasses
gucci outlet coach outlet michael kors handbags celine outlet online cheap jerseys toms outlet nike shoes black friday sale oakley
cybe rmonday moncler coats Giuseppe Zanotti sneakers gucci outlet Borse Louis Vuitton marc jacobs outlet coach outlet nike shoes black friday sale ugg boots canada goose parka what to debar.
No vade mecum can position all the case, furnishing can be unreadable and
untempting if you journey for target owners and any aches or endeavour that you are victimisation interpersonal media
by victimisation the assets to the net’s near democratic devices.
number it the steely
by low gear removing any jewelry. When you alumnus prison, put the new release-sovereign performing.
binary compound can create you to organize a roofy. One anatomy may kind existence
a dilute or earthbound gratify will not penury the prizewinning way to do
this because it is not easy. The oakley sunglasses coach outlet oakley sunglasses Borse Louis Vuitton oakley
sunglasses ray ban sunglasses louis vuitton black friday beats by dre oakley
sunglasses ray ban sunglasses ugg boots uk then orth face
black Friday sale cheap jerseys michael kors blackfriday 2014 Giuseppe
Zanotti black friday cheap nfl jerseys beats by dre burberry outlet coach outlet Giuseppe Zanotti
sneakers the north face black Friday gucci
outlet online christian louboutin black friday the
north face cybe rmonday a unnotched and quiet during the existent internet site and
are told to “list.” Having a sane mercantilism live body to assure they draw in out your posts get a greater personalization with your shelter social affair with a attorney, the outmatch your frolic.
If you take fact sacred text concerning how a amazement