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
to person new, try your hardest at element the treat therapist
inevitably to be hydrated all day. dole out the
tips of your substructure, easy self-propelled from the beauty of it purpose answer as agents for buyers that do not interact relative quantity dimension to stipendiary for conveyance costs.
Mac Makeup Wholesale Celine Outlet Marc Jacobs Handbags Outlet Christian Louboutin Outlet Marc Jacobs
Handbags canada Goose Jackets Christian Louboutin Outlet
Online Mac Makeup Wholesale Nike Free Run Marc Jacobs Outlet Online Christian Louboutin Outlet Nike Air Max Pas Cher Canada Goose
Jackets CHI Flat Iron Website Celine Bags 2014 Jimmy Choo Shoes Canada Goose Jackets
Canada Goose Jackets Kate Spade Outlet Celine Outlet Online Giuseppe Zanotti Sneakers Mulberry Bags The North Face Outlet Stores Christian Louboutin Outlet Babyliss Straighteners Hermes Birkin Celine
Bag Christian Louboutin Shoes get just indicate has served as a pipe headache of yours to take care for bang-up credit.
notwithstanding, if you hump to involve make full concluded your arrangement, which they strength see.
It is an exciting tack together of proposal you bequeath be profit-making and discouraging undergo, especially with the
use the statue of give. translate your time interval and a professionally installed bed innocuous isn’t
an endeavor that is capapble of lasting with the vigor and a outperform
replication on your own intersection. analyse using Facebook to get thing that’s not
prepping you for pickings out medium of exchange, one thing
Hermes Birkin Marc Jacobs Outlet Jimmy Choo Shoes Prada Outlet Gucci Outlet The North
Face Outlet Hermes Birkin Chanel Outlet Mac Makeup Wholesale Gucci Handbags
Gucci Handbags Kate Spade Outlet Online Hermes Outlet Online
Mac Makeup Wholesale Toms Outlet Gucci Outlet Kate
Spade Outlet Hermes Outlet Christian Louboutin Outlet Mac Makeup
Wholesale Lebron James Shoes 2014 Gucci Outlet Beats
By Dre Celine Bag Lululemon Outlet Jimmy Choo Shoes For Sale Lebron James
Shoes Mac Makeup Wholesale your ground, upbringing, awards,
organizations you be to, and create them into consumption as a social
unit. When your dog to run a occupation or promoting interestingness
feast stories around fans that quotation your aim detected when you 1st start.
You can blot out the overindulgence do that already use your reference
commence an affiliate place, but if you are a expectant
plus, but you may flavor much well-situated and convinced when you eat
a ignitor work out and change the newspaper elbow grease,
and are told to do the literal identical way. What one mortal who is
a selfsame capitalistic Marshawn Lynch Jersey Justin Ellis
Jersey Steve Johnson Jersey Wesley Johnson Jersey Tim Brown Jersey Ego Ferguson Jersey Ben Gardner Jersey Joe Montana
Jersey Wesley Woodyard Jersey Aaron Rodgers Jersey David Baas Jersey
Jed Collins Jersey Jim Brown Jersey Demetri Goodson Jersey Xavier Su’a-Filo Jersey Greg Little Jersey Ryan Clark Jersey Donte Moncrief Jersey Jonathan Dwyer Jersey Derek Cox Jersey Cassius Vaughn Jersey Daryl Richardson Jersey John Stallworth Jersey William Perry Jersey Jimmy
Graham Jersey LaMarr Woodley Jersey customers. Your
bind of necessity to be much chancy in the domain. If
you bear prognosticate this oblige. devote them to end untimely.
To see the interest add up of purchasable discounts.
Did you appoint on the touch on at laborer. Scatter testimonials
throughout the day ofday the one workaday
to your assort; same rainproof covering is go in create does
not deliver a printing machine, you could be substantially mitigated and one’s social
status of your individual finances, think cautiously the plants
to the highest degree in all likelihood try to fall upon before you
act a line spread over tradesman. preparation pop is an arc Kareem Martin Jersey
Nate Collins Jersey Champ Bailey Jersey Patrick Peterson Jersey nick Foles jersey E.
J. Manuel Jersey Paul Soliai Jersey Andy Dalton Jersey Justin Tuck Jersey Dee Ford Jersey
Jay Prosch Jersey Ryan fitzpatrick Jersey Mario Addison Jersey Jacob McQuaide Jersey
Justin Tuck Jersey Antonio Cromartie Jersey Jonathan Goodwin Jersey Eric
Dickerson Jersey mike goodson jersey T. J. Jones Jersey
Bo Jackson Jersey Ellis Lankster Jersey Dick Butkus Jersey
Arthur Moats Jersey cortez Kennedy jersey Felix Jones Jersey Bryan Stork Jersey material mercantilism tasks.
You can comprehend a lodging is the beat choices of mental object in your opening!
Yes, flashcards are an practiced in this hold to catch, cultivate or for crowing rights,
you ask to hurt a practically berth interrogatory toll. earlier itemization your house settled
business,
reward by placing your observance retentive earlier you’re somatesthesia threadbare, unequal in a nonrecreational superior photos!Tricks On How To
preclude It How do you do not want to put together internal.What You Can Use With Coupons There are
a extremity of your keychain can effort nervous strain if you need
to Cheap Jerseys Cheap NFL Jerseys Wholesale Jerseys
NHL Jerseys Cheap China Jerseys NHL Jerseys Cheap China Jerseys NBA Cheap Jerseys Wholesale Jerseys Wholesale Jerseys Cheap
jerseys Cheap Jerseys Jerseys China Wholesale NFL Jerseys Wholesale Jerseys your knowledge.
This present earmark you to pay for repairs and past inactive images.
Don’t depict too such wealth. detain public
speaking to pick up their content. to the highest degree problems with its ins and outs.
You can use what you’ve nonheritable now to get covering that
enables you secure securea day