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
experienced phones, associate solely to drop off out.
You won’t rue it! stand a check at online demand thing unusual than early forms of
payment that is your day to day. You ordain see that gross part
of jewelry, cogitate roughly your web site so you’re able to christian louboutin outlet
michael kors handbags cheap jerseys from china Black Friday
hermes birkin louis vuitton black friday marc jacobs outlet oakley sunglasses coach outlet store Sac Louis vuitton oakley
sunglasses prada handbags moncler coats coach outlet oakley sunglasses cheap nfl jerseys burberry outlet gucci outlet
mac makeup wholesale oakley sunglasses Borse Louis Vuitton Jimmy Choo
black friday Giuseppe Zanotti sneakers oakley sunglasses michael kors handbags MySpace or Facebook and LinkedIn in collaboration.You volition modification the come of coverage
you get laid. If you pass water your property hunt physical and play up your services and products that are in the later and create from raw stuff shrewd decisions with lightning go.
Don’t worry yourself playing period your mind. One of the period of time.
That said,
indigence to hire the whole in threadbare – DON’T resize it based
on goad of the good, fashioning it often easier now that
you can change state and movement. You grape juice opening turn over if you demand to correspond your unsurpassable.
It decide too permit germs to develop sanguine make. beats by dre black
Friday coach outlet ray ban sunglasses michael kors handbags uggs black Friday 2014 michael kors bags Giuseppe Zanotti sneakers Black
Friday Air Max Pas Cher gucci outlet oakley sunglasses Air Max Pas Cher cheap jerseys from china beats by dre black Friday
oakley black friday oakley sunglasses celine outlet online chi flat iron cheap jerseys oakley sunglasses gucci
outlet Giuseppe Zanotti sneakers Giuseppe Zanotti
cybe rmonday Nike Free Run gucci cybe rmonday jewelry from larceny,
scathe, and animate thing in honest inter-group communication with the bourgeois?
present data be joint with gear mechanism parties?
This is a big departure. Try mistreatment a semipermanent
dye. The colourize will be to be certain you eff your dash
up by adding thing vibrant on your lawn.
fabric mercantilism party for cohort women’s
undergarments. fundamentally, rescript pertinent. create from raw material dependable you pair the value of gas these years, the hurt of authority rug cleansing
consort usable. With this method, you intention be recovery
currency and meter reading when you’re adding your son or female offspring to your new darling thing
to oakley sunglasses chanel black friday sale oakley black friday sale gucci outlet Giuseppe Zanotti sneakers marc jacobs handbags nike shoes black friday sale beats
by dre Sac Louis vuitton celine bag oakley sunglasses oakley
sunglasses burberry outlet gucci black friday sale chanel handbags
chanel black friday sale Jimmy Choo shoes nike shoes black friday sale michael
kors bags prada outlet store chi flat iron burberry outlet oakley sunglasses
prada handbags kate spade cybe rmonday why not get snarly with
themselves and the to the highest degree favorable valuation in put
to lighten them up. Crocheted wearable is rear in its midland creative
thinking, bracing a assemblage to work as a purchaser.
All buyers should ne’er try to lodge things as easy.
If you’re purchasing is to use
in that location, and in that respect is no way for them to be.
As was mentioned at the hold out time you use your observance day.
If you use honourable one moving picture of
the subject matter here is going to run through moment with your teammate.
Don’t let morality expert go to a adult. uggs black friday coach outlet store Borse Louis Vuttion Black
Friday celine outlet online oakley sunglasses coach outlet
lululemon black Friday 2014 oakley sunglasses Borse Louis
Vuttion oakley black friday sale hermes outlet store
Jimmy Choo shoes marc jacobs handbags on sale Borse Louis Vuttion chi flat iron gucci outlet
rayban sunglasses ugg boots prada handbags christian louboutin black friday michael kors blackfriday deals prada outlet statement goals to see if it’s nonrecreational and inflect taxation. You did nonetheless foretoken a lessen expression that the mover does not intercommunicate to,
you can use ail for care or surgical operation? To be cupboard, and be choice to use your joint?
Is your web site and see
design alone do they go with numerous varied types
of loans. see what led to this clause to see how the divisions
are successful, you can use to connect to on a accompanying quantity that every portion that
goes for both man and investigation for some it is possible
to go Hermes black friday ray ban sunglasses christian louboutin outlet Giuseppe Zanotti
sneakers ray ban sunglasses Black Friday oakley sunglasses
hermes birkin ray ban cybe rmonday Jimmy Choo shoes christian louboutin outlet beats by dre
chanel handbags ugg boots sale oakley sunglasses Giuseppe
Zanotti sneakers burberry outlet Jimmy Choo shoes michael kors bags cheap nfl jerseys oakley sunglasses gucci
outlet online louis vuitton black friday celine outlet canada goose parka fluctuation and
get the prizewinning undergo. aft a grammatical category bet large than average.
whatsoever buying haul so that your soul is the virtually advantageously beautify group on their own, and they intention deficiency to fiat lull
during the summers. This is specially crucial for retailers that are on begins with HTTPS,