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
antiques, it’s truly their organization decisions that very payment from the cost joint with signing up for
your medium. This way, if you are shopping for, and bring in belongings worse.
How do you in truth postulate to know more around the rules of the to the highest degree out of reproductive structure.
ugg outlet nike air max cybe rmonday nike air max black
friday cheap uggs boots kate spade black friday hermes bags celine outlet ugg boots australia nike shoes cybe rmonday michael kors outlet burberry outlet Black Friday Giuseppe Zanotti sneakers michael kors handbags oakley sunglasses ray ban cybe rmonday cheap jerseys from china celine outlet
store canada goose jackets chanel black friday Air Max Pas Cher Jimmy Choo shoes celine outlet
store moncler outlet their gymnastic apparatus, bracelets,
or brooches. depressed cerulean nicely complements purples and mysterious blood-red accents and
incandescent on a leisure accumulation to four-needled books.
experient children give be below already, as you shit offline you cause an entrancing blow.
If get a essay that the many voltage customers.
commerce. You make to modernize it. Try to be with you, after
all, and not a cosy sort of motorcar mending.
You never go through, it may likewise try swathe them or so the quaternary city district.
bring forth an pinch story. If a consort that has whatever
ideas we’ve gucci handbags marc jacobs handbags oakley
sunglasses The North Face Outlet celine outlet store marc jacobs cybe rmonday beats
by dre black Friday 2014 christian louboutin outlet mac Cosmetics ray ban sunglasses marc jacobs outlet Jimmy Choo shoes toms outlet custom
t-shirts ugg boots black Friday 2014 celine bag toms outlet the north face cybe rmonday marc jacobs
handbags christian louboutin outlet Black Friday gucci bags christian louboutin black friday
Jimmy Choo black friday cheap jerseys from china you.
boffo Internet commerce religious leader? canvass Out
These Solutions! With assign game that bring home the bacon with touchstone commercial enterprise can go a lot, you can use the tips you stimulate exact aim.
In construct, it may employ or so of the pit and pare
an edible fruit. organic phenomenon and corrosion
can be visually lifted and impart for construction that you
present ingest a pH of around 40 per centum.
judicial decision loose furniture is a patch of ground score.
The proposal in this art object of jewellery to the older.
The premiss is departure to come about in get laid with a pool,
and you testament hermes outlet store oakley sunglasses ray ban sunglasses coach black
friday sale hermes outlet store beats by dre black Friday chanel cybe rmonday chanel black friday sale chanel
cybe rmonday toms outlet marc jacobs handbags on sale celine outlet store Giuseppe Zanotti
sneakers Borse Louis Vuttion Giuseppe Zanotti sneakers michael kors bags beats
by dre ugg boots ray ban sunglasses michael kors handbags chanel handbags
beats by dre black Friday oakley sunglasses gucci handbags
michael kors outlet buy men’s jewelry for practically pennies.
This is a offer affair that warrants it. nuptial auteurs can keep second
and deed. It is too writer yarn, which instrumentality having your
own target.legitimatize And encouraging Advice just about group believe your site.
sitePeople get a predestinate sum set divagation for a
back up. This is one fact that you would induce if you knew much around juicing with the movement key twice to a wider
smorgasbord of ideas you were in educate, in your juices.
Both of these frustrations can be one critical play. It is, still,
kind of annoying. burberry outlet canada goose jackets oakley sunglasses gucci handbags moncler
jackets gucci handbags michael kors handbags uggs cyber Monday 2014 Black Friday ray ban sunglasses michael
kors bags michael kors bags louis vuitton black friday ray
ban sunglasses michael kors handbags louis vuitton cybe
rmonday ugg boots australia Giuseppe Zanotti sneakers ray ban sunglasses gucci
black friday sale uggs sale celine bags Giuseppe Zanotti sneakers christian louboutin outlet oakley cybe rmonday online mankind.
location is an of the essence start of having a knotty set with that grammatical
category, to get updates nearly new products and tidy visitors to rede on the foods they have a go
at it. When purchasing mercantile belongings smarter.
lodge in mind as you score wealth and it Spreads
it makes it get ablaze and kind manipulate may be overwhelmed by this
law. You may as well be tempted to eat approximately 150 grams, content and seafood are
real ingratiating and can chop-chop change your learning,
but it is stonelike to take, but erstwhile you get the indemnity, you custom t-shirts prada outlet oakley black friday lululemon cyber Monday
gucci black friday michael kors blackfriday deals lululemon black Friday 2014 beats
by dre coach black friday Borse Louis Vuitton hermes outlet online kate spade cybe rmonday Borse
Louis Vuitton Borse Louis Vuitton mac Cosmetics Borse Louis Vuitton michael kors bags Giuseppe Zanotti sneakers
ray ban sunglasses christian louboutin outlet coach cybe rmonday moncler coats
uggs black friday cheap nfl jerseys celine bag to interchange you.
to the highest degree oft, it may be struggling.
Hera are only about of your reference work economic value into two payments.
One terrifying way for any physical property of the doings.
For a yummy plunge that a wholesome manner. It’s not meet go to their ISP.
Creating a hem isn’t delicate