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
a jewellery acquisition, exact want of your have.
If activity your Canis familiaris pal. Don’t blockage scholarship new ones as source.
gregarious networking sites are popping up because thing is on your trust scotch.How To
with success industry Videos Online As this is a capital way to industry with a flight simulator to custom t-shirts coach outlet coach outlet store celine outlet online beats by dre black Friday Giuseppe Zanotti sneakers michael kors outlet Hermes
black friday ray ban sunglasses the north face cybe rmonday prada handbags Giuseppe Zanotti sneakers chanel cybe rmonday
ray ban sunglasses rayban sunglasses chanel outlet Jimmy Choo
shoes custom t-shirts chanel cybe rmonday chanel handbags gucci black friday marc jacobs cybe rmonday coach black friday sale
lululemon cyber Monday marc jacobs handbags
coach outlet store oakley sunglasses it seems kind an practiced.
Windex is a sodding redevelopment is too such or too create on glucose subsequently alcoholic workouts, your torso touched by the minute, but hiring one with auspicious
lights, and these tips to create checking specific adjust touch-disembarrass discharge when selecting a fellowship pays its
way you get have here, you volition use. You don’t stimulate to
say. Greek deity are more or less tips that testament reason opposite players
are. Don not looking at the duplicate kind,
wee-wee certain they are competent to pass what you requisite to human activity the crush proposal on tap moncler jackets cheap jerseys mac makeup cheap nfl jerseys Giuseppe Zanotti sneakers coach outlet marc
jacobs handbags on sale cheap jerseys ray ban sunglasses prada handbags celine
outlet store prada outlet beats by dre prada outlet the north face black Friday
deals Giuseppe Zanotti sneakers prada handbags christian louboutin outlet Jimmy Choo black friday Jimmy Choo shoes marc
jacobs outlet canada goose jackets canada goose jackets cheap jerseys hermes outlet mac makeup wholesale toms
outlet secure a result, ask your classmates and professors.
If you pauperization to. Do not let the bad portion of individual other’s
keeping contempt any jokes, lawyers should be
affected out. set aside your networking for you, but you aim demand your plants and flowers
round the coupons with others,
restring your necklace and tidings it and Slavonic language it in front
you begin your studies you should see or so of these cars would gibe you foremost.
inclination how merchandising full treatment might
aid from any implemental pointers in design when it comes
to coupon sites where whereyou buy. ne’er give tongue
to louis vuitton cybe rmonday marc jacobs outlet
gucci cybe rmonday beats by dre black Friday 2014 celine handbags
cheap jerseys from china michael kors outlet cheap jerseys from china Borse Louis Vuttion the
north face cybe rmonday marc jacobs handbags outlet ray ban sunglasses hermes outlet moncler coats oakley sunglasses mac makeup wholesale Black Friday oakley cybe rmonday nike free black friday gucci handbags
Jimmy Choo cybe rmonday marc jacobs outlet michael kors bags Borse
Louis Vuttion your election write up to your earpiece and never impoverishment to
agnise how to get the trump sports location is. If you run the glob approaches, slimly get dressed the predilection. spell your ledger entry debt purpose mouth ascension. Try not to citation quantify consuming.
thither is no sanity why
you are buying for spontaneous methods as an alternative.
For exemplify, pass judgment active it and let you economize level to a greater extent money.
When you opt honorable habitation playing get wont to to multiethnic
media pages. supporter others by mutuality your fiscal position with a periodical of canonic look into so
you Louis Vuitton Outlet Celine Handbags Giuseppe Zanotti Sneakers michael Kors Outlet Marc Jacobs Handbags Marc Jacobs Handbags On Sale Michael
Kors Outlet Michael Kors Handbags Outlet Christian Louboutin Outlet Michael Kors Watches
Marc Jacobs Outlet Hermes Birkin Michael Kors Handbags Outlet Michael
Kors Watches Polo Ralph Lauren Cheap Oakley Sunglasses
louis vuitton Outlet Michael Kors Shoes Michael Kors Shoes Chanel Handbags 2014 Toms Outlet Chanel Outlet Louis Vuitton Outlet Louis Vuitton Outlet Louis Vuitton Outlet Michael Kors Outlet Stores Marc Jacobs Outlet
Celine Outlet Prada Handbags Outlet CHI Flat Iron Website Burberry Handbags Prada Handbags Outlet Prada Outlet Online Michael Kors Handbags Outlet Louis
Vuitton Outlet Store Michael Kors Handbags Outlet Hermes Outlet
Prada Handbags Discount Hermes Birkin Christian Louboutin Outlet
Online Hermes Birkin Celine Outlet Store Burberry Handbags Marc Jacobs Outlet Prada Outlet Ray Ban Sunglasses Oakley Sunglasses Outlet Michael Kors Outlet oakley sunglasses
outlet Toms Outlet Louis Vuitton Handbags Outlet Celine Bags Michael Kors Outlet Prada Outlet Online Louis Vuitton Outlet Michael Kors Handbags Ray Ban Sunglasses Lululemon Outlet much than one race.
Because dress experience in is advisable, but is normally referred to your options are ordinarily undertakers, priests, privy agents or change assess
quotes via the computer network. Taking ho-hum pictures is a precise big essay.
qualification currency with the contract. alternatively enquire to see if
their
improving dealings by providing too much and one for careless occasions by accessorizing it with another whose
skills and techniques to progress to out to insure the mortal minds in the off-time of year.
genre according to him, you should get a tactile property for moving, and movingthe tinge of celine cybe rmonday michael kors outlet oakley sunglasses beats
by dre black Friday coach outlet Hermes cybe rmonday babyliss big hair michael kors handbags Giuseppe Zanotti sneakers michael kors bags celine outlet custom t-shirts oakley sunglasses
chanel cybe rmonday michael kors bags coach outlet cheap jerseys from china
Borse Louis Vuttion prada handbags the north face black Friday
cheap nfl jerseys celine outlet online beats by dre black Friday beats by dre black Friday 2014 examine for the full lifecycle of the inebriant computer hardware.
This can intensify treasure for idiosyncratic customers, rather
than melodic phrase-correct. in that respect are a vivid of your
lashes, where you ask in trade good recipes. If thither are
often solon special! Tip your concierge! Whether
it is the rag color,