Go to the bottom for the update unless you want my daughter’s saga:
My adult daughter gets a whopping $889 a month for SSD. She had to claim disability before ever being able to hold down a job after getting her Masters degree, in European Policies at Bath University, UK. She has a B.S. degree in Poly Sci and Spanish. She wanted to work in Europe at the EU.
My daughter’s SSD diagnosis: OCD at 9 years old. Crohn’s disease (25” removed). Gastroparesis — paralyzed stomach. Those two did not allow her to work and we filed for SSD when she was 22. To get her approved at age 22 for SSD it took two years. Two denials and us hiring a lawyer. A judge finally approved her for SSD and she got a little over $700 to live on. She didn’t qualify for food stamps, etc. due to us making too much money at the time of filing and her living with us.
Added diagnosis at later times: POTS — Postural Orthostatic Tachycardia Syndrome. Sinus Tachycardia. hypermobile Ehler’s Danlos Syndrome (hEDS); a connective tissue disorder. We think the hEDS skipped a generation or two to get to her.
Hypermobile Ehlers-Danlos syndrome (hEDS) is a heritable connective tissue disorder that causes generalized joint hypermobility, joint instability, and chronic pain. hEDS is also associated with a variety of other symptoms and related conditions that affect many different areas of the body
Many with hEDS are wheel chair bound but we are lucky that she is mobile and doesn’t need me to care for her in any way — yet.
She cannot have over $1500 at any time in her bank account or she’s fined. In May, 2024, hubby forgot to pull out some of the funds so that the automatic deposit wouldn’t go over the $1500. Oooops. SS deposited her $860 and for two days she had over $1500 in her account by $27.00. She got a letter in July, 2024 stating that due to being over the amount in her account in May, she would have a deduction for those two months of over $100 from her next couple of SSD payments, to balance out the account.
She’s allowed one car. She sold the one she had and got an EV. (We’re trying to do our part here folks.) SS saw TWO CARS on her account. She had to call twice and give lots of documentation that THEIR deposit caused the overage and she only had one car. Resolved.
Every five years she has to prove that she continues to be disabled. One time, one asshole said she could use her arms so could work. She filed a complaint and, literally, 15 minutes before us driving an hour and a half to the main SS office in Modesto for the appointment, the agent there called and said he approved her SSD. The ups and downs this causes can be very difficult for her to deal with. She will be 40 years old this year and each year we watch her body slowly, very slowly, deteriorate. Many people with an episode with hEDS (she has had one with the sinus tachycardia) has a life expectancy of 45. We shall see.
My 74 year old husband is lucky to be able to work part-time, temporary for the City he worked with before. I also work full-time at 73 years old, as a professional long-arm quilter. We still get out PERS through our previous jobs and our social security by not overworking. We have worked hard for our SS and continue to work hard to support our daughter.
We pay an extra $1800 a month for insurance for our daughter due to her seeing specialists at Stanford. We still pay cash to other medical folks that help her. Counseling, physical therapy, etc. We lay out between $3 — $4000 a month to care of her (car, medical, food, etc.) Due to her hEDS, she had no connective tissue in her left jaw and had to have major jaw surgery. We paid $67,000 out of pocket due to insurance saying it was elective! The misaligned jaw caused migraine headaches, face, jaw, shoulder, neck pain. Plus it had to be done to help her chew FFS. But insurance kept saying it was plastic surgery and elective. Insurance paid for anesthesia, hospital though. Thank you!
How can people perpetrate fraud in Social Security? Within two days they know if our daughter has over $1500 in her account! Then…..deduct funds after that until it’s “balanced.”
She just got a new letter today. Is it a form letter all SSD folks are getting? It states that she was notified “before” that there was an issue with her account and she was going to be discounted $121 a month. Not why? Not how long? Nothing. There was no notification before except last year and that was resolved. She will be contacting our local SS office, which for now, is still open for business.
Is this part of the changes Musk is trying to put through? It’s already hard enough to get SSD for the small amount of support it affords our daughter.
This is our current situation. The fight to get what we have paid for through our own hard work can sometimes be overwhelming.
Folks, we are all going to be impacted by this administration, negatively, in some way or another.
UPDATE: She called our local office this morning and GOT THROUGH! The person she talked to said she had no access to the account on her computer. My daughter would have to go online to get any information as to why the $121 is being pulled (???) If my daughter goes to the office, she cannot go until May to resolve this. My daughter will go online and see if there is anything other than the bull shit in the letter. How many SS personnel are going to be let go? Musk wants to destroy it and so far, it’s rough right now. She filed an appeal. Let’s see how long and where that takes her.
I wonder how many other SSD folks are getting the same information with no recourse to find out. We’re in California and this state is pretty good at taking care of things. But red states?!
