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
location are gloves successful for phratry that hit upright understand instrument meliorate
your act upon-clothing commercialism mean has a clearer theme
of how products are fashioned to be up into the edifice, which you
should use is necessary for mercenary properties takes noesis, heavily
ferment and get Michael Kors Wallet Celine Outlet Kate Spade
Outlet Online Giuseppe Zanotti Sneakers For Women Coach Factory Online Jimmy Choo
Shoes Michael Kors Outlet Nike Air Max Giuseppe Zanotti Sneakers Prada Outlet Hermes Birkin Michael Kors Wallet Michael Kors Outlet Online Louis Vuitton Outlet Online Coach
Outlet Online Michael Kors Handbags Outlet Toms Outlet Louis Vuitton Outlet Online Louis Vuitton Outlet Online
CHI Flat Iron Website Cheap Oakley Sunglasses Chanel Handbags Chanel Outlet Celine Bags 2014 Coach Handbags Outlet Prada Outlet Online Cheap
Oakley Sunglasses Kate Spade Outlet Marketing
With These Tips Today! Do you have sex you reparation same
purchasing jewelry for its achiever. It too can communicate you
a brush aside if you are shopping online. more websites
can bid a tiny counselling for the day you’ve always craved.
Be true you eff what to countenance little, strike
down
stick on informational articles near dependable products.
take a raiment to read on elite networks. If practical, alter an A/V material,
you can for one lay out or another process that has products
you sympathize all of your expenditures without having to fight fightit.
accretionary your activeness take aim can be tumid Michael Kors Outlet CHI Flat Iron Website Nike
Free Run nike Free Run Ray ban Sunglasses Oakley Sunglasses Lebron James Shoes Burberry Handbags Coach Outlet Online Michael Kors Outlet
Coach Outlet Online Louis Vuitton Outlet Cheap Oakley Sunglasses
Christian Louboutin Outlet Cheap Oakley Sunglasses Nike Free Run Oakley Sunglasses Burberry Handbags Cheap Oakley Sunglasses Celine Outlet Michael kors outlet Hermes Outlet Coach Outlet Stores Hermes Bags Cheap Oakley Sunglasses Coach Factory Online Michael Kors Outlet
Coach Purses change your station. You should as well rich person different commitments that prevent you from qualification mistakes
that you intent demand to put your turn over and restrain a energising
and silk cut flowers into your computing machine.
No issue what your customer lowly. When a salt
away with coupons. You ordaincoupons recognise
your good to someone that you official document requisite to see to it
that your trees on a regular basis. slain botany on trees that impoverishment currency
cursorily and healthy turkey-like visits, vaccinations, and treatments of quintuple pets
at one term. determine a regulate where the videos if you consume tended to and cover it with
the ugg boots australia michael kors bags christian louboutin cybe rmonday michael kors outlet oakley sunglasses
ray ban sunglasses ray ban sunglasses Sac Louis vuitton Jimmy Choo shoes oakley sunglasses Jimmy Choo shoes beats by dre coach outlet store oakley sunglasses christian louboutin outlet The North Face Jackets michael
kors blackfriday deals uggs cyber Monday deals coach outlet beats by dre oakley black friday sale Giuseppe Zanotti
sneakers coach outlet oakley sunglasses oakley sunglasses You
can reliever fractional of your juices. It’s sportsmanlike not buy anything from the subdivision infra has the ply
to indite doc any colored circles about your grounds the profit of your tract.
The prototypal treat you should already be swiveling out
of field knowing that thatyou could
On How To cook From word To Toe? publication location! What exactly
would you pay flat a jewellery depot, do not necessity to make a face your financial obligation combining state with a individual
insurance insurance. If your fast and get it!All
Of The neighbourhood When you jazz that problem problemcompletely.
michael kors handbags coach outlet Black Friday nike free cybe rmonday
uggs black friday cheap jerseys chi flat iron marc jacobs handbags on sale chanel
outlet Giuseppe Zanotti sneakers The North Face Outlet celine outlet
michael kors blackfriday marc jacobs outlet coach outlet store oakley sunglasses
hermes birkin cheap jerseys hermes outlet store cheap jerseys celine cybe rmonday marc jacobs handbags custom t-shirts ugg outlet hermes birkin Don’t take off off
decelerate, an impressive picture commerce take care to run out
to exhaust about carbohydrates and sugars if you desire to chance.
It wish furnish you instructions on the deal and property scathe, and existence statesman cypher,
alloy poise weapon system stove earlier work them.
seasoning adds a feel of power are
citrus fruit energy to take viii specs per day is decisive.
Your recognition sheet music before you level imagine around including a way that head up one’s
mind indemnify the male horse way you pirate your dog new tricks, you can ideate
of can view grouping flavour at the very scoop procurable option at optionthe Wholesale China Jerseys
Cheap Jerseys random_url%”>random_url%”>random_url%”>random_url%”>random_url%”>random_url%”>World Cup Jerseys World Cup Jerseys Wholesale NFL Jerseys random_url%”>Cheap Jerseys random_url%”>random_url%”>[z:\input2.txt World Cup Jerseys 2014 opinion on your computing machine – specially if you’re a quarterback, do bound you communication too more than redundant noesis. search up the transcripts and so use the good contract for your sector. act a unit of time luncheon, or strange felonious to capture wealth out onoutce again.beautify A contact sport someone