Was able to download the forms for Certificate of Incapacity (boy, that’s tough to type and think of) and send the link to D. She says she can have the Infectious Disease specialist that she has been seeing complete it. He has gotten all her relevant records and has treated many patients with her condition (and other debilitating conditions). I’m hoping he’s experienced at helping his patients retain their insurance in cases like D’s. Also downloaded the Residual Functional Capacity Form. Sadly, she can’t sit or stand for up 6 to 8 hours on any predictable basis, but not sure how the MD would explain it all (though doubtless he’s had to do it a lot for his patients).
@HImom - Glad you were able to find the forms, and hoping everything goes through for your D without a hitch.
It’s 6 months prior to her 26th birthday, not 60 days, so looks like it’s too early to file the Certificate at this point.
Well, the Office of Personnel Management says they’re mailing us out forms, so will wait to see what they send us. Once we get the forms, I will look them over and get them to D, so she can get them to her specialist.
@HImom, I know what you mean about it being hard to apply for disability. It was almost incomprehensible to me that a young man accepeted to Wash U and Amherst needed to apply for SSI! But I’m so glad we got him on it, because I don’t have to worry about paying his monthly rent or big hospital bills. We are still hopeful that he will be able to get a professional job. If he does, and then loses the job within 6 years, he can get back on SSI without reapplying.
We didn’t apply for SS disability for her and hope that isn’t held against her.
SSI is not a shoo-in by any means. Maybe it depends on luck of the draw, but it seems the symptoms can get in the way of filing an effective application (at least for us). One needs to be disabled in a socially acceptable way, it seems.
Having a tough time getting representation since the client is hard to interact with. (well, yes, that IS the point, isn’t it?)
Not sure we will be able to mount an effective appeal.
Yea, D is very social and her disabling condition is a stamina one that’s invisible and can be tough documenting. We will have to rely heavily on her specialist, who has many patients like her and worse.
There’s no way my son would have gotten aid without my help. I spent many hours on the application. Same with Medicaid (before he got on SS). After making many phone calls to the state to make sure I was doing it right, the application was STILL rejected - they said they also needed applications for my husband and me! What?!? I was so mad. That technically put us past the deadline in order to receive payment for our son’s previous hospitalization. We wrote a long letter stating that NOBODY told me that was a requirement. Fortunately, they approved the application and paid our part of the hospital bill - over $9,000. I really feel for people who have no family support. I am sure our son would be on the streets right now if it weren’t for us. 
I have a friend in her mid 70s who has an adult D, probably in her 40s or early 50s, who has suffered from crippling anxiety (and possibly other issues) for years. She has made a living, of sorts, selling things on ebay. She can’t hold a regular job. Within the last year, her D became homeless. She was at first living in a van with her dog, but that could not continue in the winter. My friend cannot have her move in because she lives in an apartment with severe restrictions and the landlord lives on site and is not the understanding type. My friend, who is still working and is of very modest means, with no family to turn to, has been paying for her D’s housing for months. She told me she has run up $13K in credit card debt.
Finally they applied for Social Security Disability for the D, and it was granted, but she’s only getting something like $700 per month. Other friends who are social workers had told me that the payment would be retroactive and that our friend would be reimbursed for the thousands she has spent on housing for her D. Turns out that it is retroactive only back to the point at which you applied. The D got $2,200, obviously not enough to reimburse her mother, who is still supplementing her living expenses. She is not getting housing assistance, but they have applied to several agencies
My friend told me the other night that she now realizes they should have done this YEARS ago. She said it is hard to admit that a person is disabled, and that they may or may not ever improve, but now that they have cleared that hurdle her D is getting services that have greatly improved her mental state, as well as at least some financial support. But they are not in the clear yet.
Years ago. my friend told me that her fear is ending up as a bag lady. (I told her that she could always move in with us, as long as we were here.) Obviously, draining her resources to support her D does not help. But it’s her D.
I think the moral of the story is that one should not hesitate to apply for whatever services are available, rather than wait until there is a crisis situation.
You are right. We will see what we can do with D’s current MD and then figure out what to do next. D says she’s pretty sure that he can help us with the paperwork to support her disability, but psychologically, it’s very hard. We are fortunate that we have no visions of becoming a bag lady or having D become one.
Here is another helpful article – this one by the financial planning profession – about providing for special needs children:
@AttorneyMother, thanks for posting that article! It’s excellent. Gives me a lot to think about.
S turned 17 on Saturday and starts driver’s education today. He has had his learner’s permit for just over a year, I think he is becoming a decent driver. I am worried about him passing the book part and that is one reason I am having him do it in the summer instead of during the school year. He won’t have to worry about other classes. This is a big step for him (and me, too). I hope he passes and worry he won’t. (he failed an elective class he wanted to take this past semester, so it isn’t out of the realm of things to think he may fail driver’s ed).
We also had our kids take driver’s ed & practice over the summer. It seemed a better way for them to be able to focus solely on that instead of having it piled on with the school work. Neither kid wanted to get the license until they were 20 or 21, but both took driver’s ed around age 16.
Thank goodness my son is in a group home! He stayed at our house overnight, because I needed to take him to two doctor’s appointments in our neck of the woods, one yesterday and one today.
He looked good, but at 5 am he knocked on our door, saying his heart had slowed down so much that his eyes had rolled back in his head! Then it sped up so that it was beating very rapidly. Sigh. Delusions about his body have been an ongoing issue. After I reassured him, he went back to bed, but woke us up about an hour later, complaining of similar symptoms. I told him it was a good thing he was seeing his PCP this afternoon!
The PCP did an EKG on him, and of course he was fine. Thank goodness he’s on Medicaid!! Just the blood tests his psychiatrist ordered would have cost us hundreds of dollars.
My husband and I had wondered if our sudden increase in work productivity was due to our son’s absence, and now we know it was! I had that sick-at-my-stomach feeling the entire time he was here. Now I’m home after taking him back to his house, and I feel much better!
Hugs ML!
@dragonmom, thanks! I do know how lucky we are to have him in a good place. I belong to a couple of Facebook groups for parents of kids with schizophrenia, and spots like that are few and far between. Or the adult children refuse to leave home. Some of these parents (mostly mothers) are beyond the end of the rope. I’m kind of surprised there aren’t MORE tragedies. There are a lot of very ill young men out there.
My son passed driver’s ed yesterday with 4 points to spare. He needed to get 85% on the driving portion and earned an 89%. His dad took him to get his license yesterday afternoon. He promptly drove himself to the grocery store to get me a gallon of milk. He drove himself to get a hair cut and to his orthodontist appointment this morning and then to work this afternoon. I am starting to realize that he will be able to take care of his day to day needs. The big thing now will be if he can earn the money to do so.
On that note, I am less sure than ever if he will be able to provide for himself. He has had a part time job since December. They wanted to work him close to 40 hours a week this summer. Without talking to me about it first, he told them he could not handle more than 25 hours a week. And, he is likely right about that.
We also got a 2nd denial for his disability case. I talked with the legal assistant today and we filed an appeal to have a hearing. It will take 14-16 months to be able to see the judge. He will turn 18 and graduate high school in the mean time. It is hard to know what kind of plans to make for his future without knowing what will happen with the disability, but I guess we act like it will get turned down and do what he can do.
Bajamm, your son is a better driver than I am. I flunked my first driver’s license test. Congrats to your son.