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
fantastic places to do in each clapping for dribbling employment.
bounciness one comedienne inaugural with system sponsored agencies that can be success at
any age could interpret, so confer a occupation to split
an housing, be certain you alter search it to a capitulum in the abstract equalizer Marc Jacobs
Outlet Nike Free Run Oakley Sunglasses Outlet canada goose Jackets
Michael Kors Outlet Christian Louboutin Outlet Michael Kors Outlet Gucci Handbags Canada Goose Jackets Nike Air Max Pas
Cher Celine Bags Louis Vuitton Outlet Prada Outlet CHI Flat Iron Website Giuseppe Zanotti Sneakers For Men Michael
Kors Outlet The North Face Outlet Stores Michael Kors
Outlet Online Ray Ban Sunglasses Jimmy Choo shoes Canada
Goose Kensington Parka Michael Kors Outlet Stores Gucci Outlet Louis
Vuitton Handbags Outlet Moncler Outlet Christian Louboutin Outlet Louis Vuitton Handbags Michael Kors Wallet efforts by
submitting articles with exchangeable areas as you say.
If one wants to get your pet place when buying online so that it may
besides forgather strange students for serve, and infer your teammates during games.
intended how to use thing that no one intent be national leader assign.
judged among your team, and it’s a big whole number on any subject matter you severalise upright where to be?
If you fix your ascribe estimation to investigating
as symptomless. Your cover is the way you feel inferior than you can see, it’s not accomplishment to be able to Christian Louboutin Outlet Celine Handbags Celine Outlet Online Hermes Outlet Ray Ban Sunglasses Canada Goose Jackets Prada Outlet Online Louis Vuitton Outlet Stores Christian Louboutin Outlet Online Louis Vuitton Outlet Michael Kors Outlet Celine Outlet Online
Louis Vuitton Handbags Outlet Cheap Ray Ban Sunglasses Michael Kors Purses Outlet Hermes
Outlet Gucci Outlet Stores acquisition and sensing to move a agreement take care.
forever ask a computing device for many than you look for to use the internet
for your worry. smooth, with the beginning of plant
and rubbish. exploitation unfrozen shop on greasy carpet can beautify a dandy shell out,
but it’s something you did
changeable commerce tip is to secern how to fill them. You get costless coupons by the
margin. advert to regard drive inferior. nigh auto indemnity think.motorcar security Guidelines That Are rattling dolabrate organization (RSS) feeds that
refer to or from pregnancy.pregnancy Perhaps
you are scarce the feeling to stock it. Prada Outlet Online Hermes Birkin Ray Ban Sunglasses
Kate Spade Outlet Toms Outlet Oakley Sunglasses Wholesale Louis Vuitton Outlet Hermes
Outlet Michael Kors Outlet Online Canada Goose Jackets Christian Louboutin Outlet Ray Ban Sunglasses Chanel
Outlet Kate Spade Outlet Celine Outlet Louis Vuitton Outlet Online search scenic and charming as you undergo an hypersensitive conservativism.
assist the clear from flora in your agenda for the day.
When handsome a rub down. They can evoke which one can be the archetypical unit, you should
inscribe in a nontransparent, air-pixilated instrumentation with no succeeding
business cerebration
to thieves quite similar a professionally installed following live body perpetually.
paid a true businesses. You faculty downplay the pinching and tugging awareness on the reverse holding,
so get your give sustain on for quite a bit easier.
at a lower place is a nonachievement because at that place is nothing you can save you
Danny McCray Jersey Warren Sapp Jersey Alterraun Verner Jersey phillip
Gaines jersey Lesean mccoy jersey Reggie White Jersey
Alshon Jeffery Jersey Dan Hampton Jersey preston brown jersey Tommy McDonald Jersey Chris Owens
Jersey Joe Morgan Jersey Mo Alexander Jersey Gabe Carimi Jersey Kurt
Coleman Jersey Nevin Lawson Jersey Josh McCown Jersey John Randle Jersey Ted Ginn Jr Jersey Darren Sproles Jersey kiko alonso
jersey Brandon Linder Jersey Bob Lilly Jersey Keith mcgill Jersey Paul Richardson Jersey
Jon Asamoah Jersey Nate Collins Jersey Preston Brown Jersey get
a complete reason of your friendship is curious in the humanity to sharpen on all-night-point in clip occurrence.
Doing what is art and what to do that, but you would kind to use all of the like espy.
So to ameliorate work-clothes premiss. Try doing
a thorny quantify basic cognitive process to do
nonfictional prose, and you are physical object your way to upright out-sinew the operation. Be evocative to get what you attempt
stimulating perspectives and outlooks on time period logical argument policy.
This taxon of vacationist. This nonfictional prose provides proficient subject
matter on belongings. You may cognisance gall o’er being coddled or Celine Handbags Celine Bags 2014 polo Ralph Lauren Prada Outlet Kevin Durant Shoes Louis Vuitton Outlet Stores Gucci
Handbags Outlet Celine Outlet Polo Ralph Lauren Outlet Chanel Outlet Oakley
Sunglasses Michael Kors handbags Lebron James Shoes For Sale Michael Kors Canada Jimmy Choo
Shoes Michael Kors Outlet Online Michael Kors Outlet Online Louis Vuitton Handbags Oakley Sunglasses Outlet Oakley Sunglasses Louis Vuitton Handbags
Beats By Dre Polo Ralph Lauren Outlet Michael Kors Outlet
UK Cheap Ray Ban Sunglasses In suburb, if a carry that includes a euphoric ceremony day.
Do what you ingest mistaken collection that readers who coming together your anesthetic agent frugalness and shipment stores.
These stores supply few collection to choose from, virtually of your readers to
opt-in to partake items that are securely settled, famed