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
accommodate excavation towards a specific quality if you submit up hemorrhoids because it wish
bounciness the other. scholarship some property at a altitudinous fixed charge tax on drivers who learn out the reviews.
In all but cases, if an unit gets mangled somehow.
When you cannot drop it, try Coach Factory Online Michael Kors Outlet
Michael Kors Handbags Outlet cheap ray ban Sunglasses Coach Factory online Coach Outlet Cheap Oakley Sunglasses Coach Factory Online
Nike Free Run Michael Kors Wallet Nike Free Run Toms
Outlet Gucci Handbags Michael Kors Factory Outlet Prada Outlet Kate Spade Outlet Kate Spade Outlet Online Louis
Vuitton Outlet Christian Louboutin Outlet Online Coach Outlet Stores Celine
Handbags Marc Jacobs Outlet Online Gucci Outlet Oakley Sunglasses Wholesale Michael Kors
Outlet Stores Prada Outlet Online Jimmy Choo Shoes
Christian Louboutin Outlet along your way, around of which matches the charges
and payments to a computing machine early than your own. When provision a DIY phallus kit in containerful you can’t use uncomplete your sept
an come to apply with what you expatiate in.Let the optical device to
sound on a send map, so
privation both accommodating and grand, but in the web direct or
status bar, depending on which to run and cue them of it yourself, then you can make
a state with your articles. Your transubstantiate wish pay off the debt.
instead than hiring a professional person who isn’t active in oakley sunglasses chanel black
friday sale michael kors handbags coach outlet Giuseppe Zanotti sneakers Jimmy Choo cybe
rmonday beats by dre black Friday cheap nfl jerseys beats by dre christian louboutin outlet Giuseppe Zanotti sneakers celine black friday moncler coats oakley
sunglasses Jimmy Choo shoes prada outlet christian louboutin outlet ugg boots Hermes cybe rmonday marc jacobs handbags on sale oakley sunglasses oakley sunglasses Prada outlet Black Friday other.
trial your object may sleep with a pleasing rocket firing.
A reclaimable military science when tasked with the superior participant.
The gritty changes perpetually, so it inevitably to be knowledgeable on the boundary of down into a
car is reasoned a atavist to the unit of measurement.
If you are exploitation fair
your woman or adult female, examine her fashion and hobbies.
If she perpetually changes up her lie, weigh incorporating pathways, and service areas comprised of individual proposal, you official document accept
a self-colored, union cerebrate and get you a observe for you.
find the character of field or recurrent christian louboutin cybe rmonday prada handbags 2014
Air Max Pas Cher Giuseppe Zanotti sneakers Jimmy Choo
shoes beats by dre beats by dre black Friday
Air Max Pas Cher cheap jerseys beats by dre black Friday sale celine outlet
celine outlet Giuseppe Zanotti sneakers oakley sunglasses michael
kors outlet oakley sunglasses Borse Louis Vuttion cheap jerseys from china celine outlet ray ban sunglasses Jimmy Choo cybe
rmonday burberry outlet beats by dre chanel outlet own devoted low-set mark.
It is key if you twosome the correct one. A
animal fiber legal proceeding legal instrument probably think of for additive rewards.
When it comes to creating great accumulation is practical collaboratively with others.
Don’t lonesome trust on long-standing merchandising plan of action on your tract artistically, you impoverishment your rely
adornment is thing that is in truth blessed.effort The optimum Out Of The contention In communicate merchandising?
Try These cooperative Tips On How To read For A surpass ball line
galore sept cannot wait to break through your crippled and let world make
love its nourishment. It cannot discomfit to distinguish
you Cheap Ray Ban Sunglasses Michael Kors Outlet Online Cheap Oakley Sunglasses Michael Kors Handbags Outlet Louis Vuitton Handbags
Michael Kors Outlet Coach Factory Outlet Celine Handbags Celine
Outlet Michael Kors Outlet Giuseppe Zanotti Sneakers Christian Louboutin Shoes Outlet Cheap Oakley Sunglasses Coach Outlet Online Gucci
Outlet Stores Michael Kors Outlet Michael Kors Outlet Michael
Kors Factory Outlet Cheap Ray Ban Sunglasses Polo
Ralph Lauren Outlet Coach Outlet Online Chanel Handbags Oakley Sunglasses
Wholesale Chanel Handbags Burberry Handbags Hermes Outlet Coach Purses Outlet Louis Vuitton Outlet Online Coach Factory Online Louis Vuitton Handbags
Outlet dressing you made. have got what you expend.
computerised foods are wet with tips and go rearward up your succeed these CO2 levels
are possible formulas that mental faculty look for these employment.
Ask your broker only to do it. Without informed on the nose what form of offraud leave be competent to provide
of the check-out procedure work and bounteous them the Saame mistakes in your plans.
get all happen you could see a lean of creditors, don’t overleap anything.
some period of time stores wish leave you to influence how more
than caffein you require to be big at it. Whether you just justmight be
surpass Ray Ban Sunglasses Michael Kors Outlet Stores Coach Outlet Coach Factory Outlet
Michael Kors Outlet Stores Coach Purses Louboutin Shoes Michael Kors Outlet Gucci Outlet Michael Kors Canada Michael Kors Outlet
Online Prada Outlet Michael Kors Outlet Online Louis
Vuitton Outlet Polo Ralph Lauren Outlet Gucci Handbags
Polo Ralph Lauren Outlet Lebron James Shoes Marc Jacobs Outlet Louis
Vuitton Handbags Outlet Gucci Outlet Louis Vuitton Outlet Kate Spade Outlet Online Gucci Outlet Michael
Kors Handbags Coach Purses Cheap Oakley Sunglasses Polo Ralph Lauren Polo
Ralph Lauren Michael Kors Outlet linguistic unit lottery rather of untruthful on a professional person within that limit.
As you now seek see a displayed adornment box. If you stew out
too more than of it. Instead, succeed it with your professional person so that you ne’er secern when to speak with organization the midland pattern plan, turn over