Michael Astrue
The National Organization for Rare Disorders (NORD) considers today’s announcement by the Social Security Administration (SSA) of expansion of the “Compassionate Allowances” program to be extremely important to patients and families affected by rare diseases.
Since Michael Astrue became Social Security Administrator, he has provided strong leadership in addressing issues that were very difficult and discouraging for people with rare diseases. NORD applauds SSA for creating and now expanding the Compassionate Allowances” program, which provides expedited review of disability applications for people with severely disabling diseases.
Over the years, people with rare diseases have often encountered delays and frustration when they apply for Social Security disability assistance because those making the decisions are not familiar with their conditions. In 2008, Commissioner Astrue moved to address this problem by establishing the Compassionate Allowances program. Initially, the program covered 50 diagnoses. Today, 38 additional ones were added to the list.
Social Security selected the 38 medical conditions following public hearings and input from medical experts at the National Institutes of Health (NIH), as well as NORD’s Medical Advisory Committee and other medical experts. Additional information about today’s announcement is available on NORD’s website (www.rarediseases.org).
Related press release: http://www.socialsecurity.gov/pressoffice/pr/cal021110-pr.html
Over the years, people with rare diseases have often encountered delays and frustration when they apply for Social Security disability assistance because those making the decisions are not familiar with their conditions.
YES that’s true for me….
..exellent blog ! thanks!
And difficult that someone can understand to us because the rare diseases are not like an infuence of which all they know. The suffering are of the patient and of who it is near, sometimes I speak with persons you know the dermatomyositis? perhaps they answer are eczema, my boy and from 10 years that suffer. thanks
I just got approved for disability after a two year battle with SS. They just had no clue as to what I had. My attorney worked extremely hard to get them to understand that Churg Strauss Syndrome is an incurable, potentially life-threatening, and progressive disease. This is exactly why I work so hard to raise awareness for rare diseases…we’ve got to tell the world what they are!
In these years of disease of our boy we have not never had a psychological support for our son, he alone passes to the days its single friend and personal the computer, who suffers from rare diseases comes put from set apart part, little is the persons who are sensitive, appreciates very what ago eurordis
I am trying to collect SSD benefits because I couldn’t work last year. I just had surgery, was having vision problems and was being treated for emotional reasons by a M.D
I submitted my form online three months ago and all I get is calls from there government office asking for more information, or so other time wasting question such as “my job experience,” I worked since I was17 , yet this woman , was intrusive, uncaring, and told me “I am just doing my job.” when I asked her if “Is there any more info you need???
I think having a major emotional issue involving depression, and having complications from PRS , is more than enough illness to collect SSD.
They simply do not or will not give out these funds to anyone. It is almost like winning the the “desease lottery”. I guess having a rare disease is not good enough to be considered for SSD. Who is getting this money??
Why isn’t all rare disease patients eligible for SSD.
If they walked in our shoes they would understand , but they don”t. At least not yet.
Yesterday I had my medical exam with a doctor from SSD, it is the last step before a decision ismade if I qualify for SSD benefits. I applied over 7 months prior. The doctor looked at my charts and I saw by her face she never heard of Parry Romberg Syndrome when she asked me to tell her what exactly is this syndrome. I didn’t want to sound like a professional blogger and advocate so I told her my story and the medical symptoms I was still having.For the next 30 minutes I did most of the talking. I was advocating I thought how ironic I was actually advocating at the dept of SSD!f right in the SSD building. When the exam ended I was asked once more if Parry Romberg Syndrome was pronounced Perry or Parry. When I was on my way out of the office I saw the doctor who examined me was on the computer looking up PRS on a goggle search. Right there I saw my blog “weareallalreadybeautiful” by Cheryl Rick Klein was on top of the search page. She started to go back to look for me but I decided to be discreet and continue to exit the buiding. It was a beautiful sunny day outside and I was smiling.
Hello again,
I have received 3 calls from the office of SSD Claims and D case of PRS they ever had a claim filed with them. I am sure I am not the first. What disturbed me most was the way my Case worker handled her interaction with the patient, in this case me. Who trains and educates the people who are dealing with directly with patients? Why doesn’t the Department of SSD know so little about rare diseases? what qualifications do their employees need to get this kind of position? Obviously,” respect” and sensitivity dealing with patients one to one is not a important job qualification . Mrs, Payne, my case worker in the Washington office is almost ready to bring my case in front of yet another
two doctors who will make the final decision if I can collect benefits.
I had to be “nice” or my claim would land in the huge stack of declined applications. Why was she asking such guestions. She informed me more evidence I actually had Parry Romberg Syndrome the greater my chances were to be approved in the final stage of my application. She went on to ask things like how deformed is my face? and if I am afraid to be seen in public? I have had many reconstructive and cosmetic procedures so I look pretty normal. You must look disfigured still she added nbviously not listening to me.
Again I said” I do not look like a monster” and she could see my photos on my blog “You are already beautiful”my life living with Parry Romberg.Syndrome ” which is a very personal account of what it is like to have a undiagnosed illness that destroyed half my face from 11-14 years of age.
I write because I am “over it” the social stigma I once felt is now part of my charactor and who I am. I am proud of the person I have become.
The President of the United States has to do more as far as educating the people who are making the decision if I am “deformed”enough to receive SSD? I know through EURODIS and NORD rare diseases are starting to be accepted by SSD. Though, it seems Parry Romberg Syndrome is rather new to SSD.
I don’t know if I will collect benefits because of the lack of data and research
I will advocate and continue to raise public awareness about PRS and other Orphan Diseases, starting with the people who are employed by Obama to run Social Security Claims.
Compassion and dignity for patients at the National Office Of Social Security should not even be a issue. This is a outrage.
Thank you,
Cheryl Rick Klein
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I have been approved for SSD after seven months of interviews, two medical exams and numerous questions about my inability to work from my case worker in Washington D.C. I was told my case was still pending and still had to be evaluated in Texas by the department of quality control. I never knew how difficult and stressful this claim would be.
I had to provide photos of myself before I had any reconstructive surgery. I threw out most of those scary photos in my teens. However I had my original dermatologist who filled in my face with silicone injections every month from the age of 13-19 years old.
I was a “Test case” for a “famous” dermatologist and would consider my case if I agreed tp have photos taken at each visit to be documented and published in medical journals since I was still not diagnosed. His final decision to take on such a young patient ” he to be a beautiful girl when he examined the left side of my face which was not affected. Then I remember his humilating comment meant ONLY for my mother to hear but I heard it and never forgot every word.
” The main reason I will do this is because I see she has potential beauty based on examing the other side of my face that was PRS free otherwise I would tell you to take her home and not waste your money”
I was finally diagnosed when I was 35 years old. Parry Romberg became a classified rare disease in the year 2000.
Getting approved for this claim took a lot of work and emotional stress. I basically had to advocate for myself by myself.
It was a small victory for me and hopefully other patients who are applying for SSD claims with PRS or a similar rare disease will have a easier time because at least a few doctors know now what Parry Romberg Syndrome is.
Cheryl Rick Klein