Social Security Disability ‘Compassionate Allowance’ – Only For Those Who are Impoverished?

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