My second daughter had a genetic disease called "Cystic Fibrosis" from birth to death at the age of nineteen. I was instructed by Medi-Cal and California Childrens Services to apply for Social Security to help with her care and other personal things she might need.
I did all the applications and provided all the necessary medical records that she acquired for the nineteen yrs. of her life. She was denied all four times, their reason was" she was not sick enough". I even had to get special permission to check her out of the hospital on an oxygen tank to take her to a Social Security Dr.'s office fifty miles away for yet another opinion. Social Security would not even send a outside dr. to her bedside for the evaluation.
She could not breathe, she had four phenumo thoraxes and had to have chest tubes for long periods of time. She had no strength to walk, and barely ate enough to get a worm alive. One of the times they were inserting the chest tube, they asked me to talk real close to her ear, encourage her to breathe, to fight with all that she had. I almost lost her that day, thanks to God I still had a few more days to love on her. But she was not sick enough!
"Not that she was sick enough," she did pass as I said just one month into her nineteenth yr. But one week before she passed our so called hero's at social security granted her with a $600.00 check, behind the huge breathing mask her little eyes rolled, she scribbled on a piece of paper what do I need it for, I will sign it, you use it to get some clothes for my little sister and brother.
My fourth child has the same disease, she is now nineteen years old and Medi-Cal and California Childrens Services is asking me to get Social Security for her. They have already told her "NO" and guess why; she is not sick enough. Seems I've heard that somewhere before.
You know ladies and gentlemen, it's not really about the money, but can any of you tell me what it does take? Is it a death certificate just waiting in the wings, how sick is sick enough? What would any of you do if it was one of your own children or a grandchild? How would you want the rules and regulations to read? I pray diseases such as Cystic Fibrosis never darken your doors, just please help this every day citizen get some answers.
One last comment, I don't begrudge anyone getting medical help, but those who come to our country who are not legal citizens get better care than I or my children have ever gotten. Tell me, what is wrong with that picture?
Personal experience, watching my daughter die. And documentation from social security.