Ideas for a disabled daughter when I am...ahem...no longer around

In My Humble Opinion
41

Thanks for your insight!!

I personally never thought of government employees as dicks - hell, my family has a long history of dealing with the IRS (on a professional side) and I don’t even think most of THEM are dicks!! It’s just the ones that ARE, are the ones you hear about.

My son definitely would not qualify as disabled. He held down a job - admittedly, not one to get rich on - for several years before returning to school fulltime. We’d have like to have him declared as disabled, not for SSDI purposes, but to keep him on our healh insurance - though as we’re in our early 60s, that would just have postponed his current situation a bit longer.

I suspect we can get doctors to declare our daughter disabled (again, for insurance purposes). An SSDI application is another matter entirely. We’ve told her we’ll no longer subsidize her rent as of April - we promised her 1 year and that ends then. This has not, yet, motivated her to do anything like voc rehab, her learner’s permit, etc. All of that is part of her mental health issues, and unfortunately a deadline like that causes her to shut down rather than take action. So you all may want to be on the lookout for a thread such as “Daughter becomes homeless, what should we do?” or “Homicide lawyers? NEED ANSWER FAST” (if she attempts to move back in with us).

42

This is the thing that struck me when I was first learning about this stuff.

If literally there is a not a single employer in the entire USA who’d hire you for any job at any wage, then you’re eligible for SSDI. If you’re any more employable than that, you’re not “disabled enough” under the regs.

Whereas what most people naively expect, or mistakenly believe, or hope for, is that if they can’t earn a “decent” wage however they define it, a government program will top them up to that wage. From whatever work they can find locally that they’re still willing to do for the wage offered.

The gap between those two concepts is ginourmous.

43

Slight nitpick - there has to be “a significant number of jobs”, which would likely require more than a single employer. But your overall premise is sound.

Coincidentally, today I worked up a file for a 20 yr old w/ autism. He received accommodations and an IEP through high school, where he achieved “excellent” grades, with no reported behavioral problems. He participated in several extracurriculars including jazz band, and plays clarinet, sax, and piano. He currently attends community college (with accommodations), which he drives to and from by himself on his unrestricted driver’s license.

I’d appreciate peoples’ perspective. This person is capable of independently driving a vehicle on public streets, such that he adheres to a schedule of attending classes. (The drive is relatively short, but on quite major suburban streets.) I acknowledge that he is not unimpaired, but I have a hard time imagining why he is not incapable of performing SOME simple, low stress work. I could easily imagine several jobs in which one would encounter less variability, unpredictability, potential danger to self and others, stresses, needs to adapt, etc., than one encounters when driving.

Yet this person has a lawyer, and several professionals supporting his efforts to obtain ongoing disability benefits - in addition to the educational/vocational assistance he is already receiving.

I truly would appreciate folks’ input.

44

Not knowing the regulations, my thoughts are… Are these the possible scenarios for this young person?

  • Get social security (SS) and stay in school
  • Be denied SS, drop out of school and get a job – Bad long-term consequences
  • Be denied SS, try to stay in school while also holding down a job – Probably end up having to drop out

It seems like a hard situation for the person involved. Yes it does sound like the person is employable, but it seems heartless to make them drop out of school and become a janitor.

ETA: In human terms, for this person, being in school basically IS their job, and is preparation for later, paid employment.

45

You pretty much hit on one of my biggest problems w/ SS disab. There is no option of paying temporary benefits. If I put a 20 yr old on the rolls, they could remain there until they reach retirement age. (Yes, there is a poorly administered possibility of recommending a “continuing disability review” at some point in the future. But - w/ a CDR you must show “improvement.” If someone has a lifelong condition which did not meet the def of disabled when grated bens, how will they “improve”?) There is no possibility of saying, “here are benefits for the next 2 years to allow you to get over the hump.”

I favor very generous assistance for people in need. But I’m not comfortable with the disability programs serving as de facto “welfare.” I have absolutely no difficulty w/ this person or others receiving generous vocational/educational/medical assistance aimed at improving his job prospects. In fact, I would gladly support my taxes going to more general and more generous welfare - if not universal income.

As in many of these cases (and I suspect examples in this thread), this claimant lives at home, in an upper class suburb, with 2 parents, both of whom have postgrad degrees. So he does not HAVE to quit school to work as a janitor in order to survive. But if he CHOOSES to attend college when he COULD work, why should that earn him and his family a gov’t stipend?

Nor am I comfortable with the overcharacterization of people who are in need as “disabled.” IME, that term often connotes/encourages a certain level of helplessness. IME, many people seek disability benefits largely because so many other public support programs have been curtailed.

46

Just got here, skimmed over most of the posts so I apologiza if I missed something and am being repetitive.

Regarding a trust: you absolutely, positively, must set this up through a special needs attorney. We have a special needs trust which gets funded upon our deaths. The trust is by nature irrevocable and has specific limitations on what the funds can be used for. This is necessary in order to maintain eligibility for SSI, Medicaid, and most state or county special needs supports. If you mess this up the best case scenario is that your daughter will be disqualified from any benefits until the trust is depleted below $2k. Then someone has to help her re-qualify for the benefits that she lost.

Make sure that no other relatives leave her anything in their wills other than to the special needs trust.

Finally, there is always the confusion between SSI and SSDI - Supplemental Security Income and Social Security Disability Income. SSI are for the permanently disabled who had never worked and therefore have never paid into Social Security. The money is paid to a Representative Payee who needs to file annual reports regarding how the money is used. Qualifying for SSI also qualified the individual for Medicaid. Qualification is automatic for certain diagnoses. My daughter has been getting SSI for close to 20 years and we have never had any communication from the SSA about removing her. When she does occasionally earn money from sheltered employment SSA does reduce the monthly benefit to compensate.

SSDI is a completely different animal. My wife was on SSDI for a number of years and did receive plenty of communications about going back to work (which she did after some brain surgery fixed her condition).

It is very important to clearly understand the difference between SSI and SSDI, especially when applying and when dealing with the SSA or other agencies.

47

Just FYI - a lot of this is incorrect. Just in case anyone else wishes to rely on this.

48

You are assuming that absolutely anyone can get a job as a janitor. This is just not true. There are many who cannot do even menial work independently. My daughter has on occasion had sheltered employment. In order to do any sort of work she required someone supervising her 1:1 constantly. She needs constant prompting to stay focused on the job, she needs someone to handle her when she has behavioral outbursts (meltdowns). That is just not economically viable for competitive employment - basically paying two people for one job.

She has lived in a group home since she became an adult, funded by her SSI and state resources. Yes, she grew up in an upper class suburb with two parents with postgraduate degrees. Parents who were under enormous stress and near suicidal trying to deal with her behaviors and lack of a future. Now she is an adult, and deserves to have as independent a life as she is capable of. I do not wish the fights we had to go through to get her into that situation on anyone.

49

Specifically what? Every time we deal with SSA we need to specify that we are talking about SSI, not SSDI. A completely different set of rules apply.

50

One volume of the regs I have for SSI/SSDI runs 1300+ pages, so I’m not going to try to explain every intricacy of both systems. You are correct that there are many differences between the 2 - although the definitions of “disability” are essentially identical. What you describe - such as your daughter needing a rep payee, definitely is not universal to all SSI recipients.

And I’m just using “janitor” as a general term. My understanding is that there are MANY jobs less demanding than “cleaner” as the DoL describes janitor. My point/opinion is, if you can drive a car on city streets to a community college, there’s a damned good chance you can perform SOME menial job outside of a sheltered workplace. You may disagree. But if you think someone is unable to do the simplest job imaginable, I sure don’t want to be sharing the streets w/ them while they are driving a vehicle.

Beyond commenting on the case I just reviewed and asking for feedback (which has not been forthcoming), I expressed no opinion as to the appropriateness of any particular person receiving SSI or SSDI. I’m glad your daughter is getting some assistance. I’m sorry you feel the effort required so stressful.

You probably do not have any idea as to how many cases make it to hearing that are absolutely meritless. How many claimants - and lawyers - are entirely ignorant, uncooperative, or flatout lie. Unfortunately, many of the things you consider unnecessarily onerous are needed to make sure meritless claims do not get paid. And - one thing that can be the most challenging - someone can be ignorant, uncooperative, and untruthful - and still be entitled to benefits.

One final note - next week I have a hearing in a case were the initial claim was filed 1 year ago tomorrow. So in 1 year and 1 week the person will have:
-applied
-been initially denied
-requested reconsideration
-been denied again
-requested hearing
-had hearing scheduled
-had hearing held.
During that time they were also sent to 2 consultative medical exams, and had their files reviewed by 4 separate drs.

Of the 53 weeks between application and hearing, 6.5 months incuded:

  • 60 days after intial decision to seek reconsideration
  • 60 days after recon to request hrg
  • hrg must be scheduled 75 days in advance.

No, of course not all cases are handled that promptly. But think of that, the next time someone complains about the incompetent/inefficient bureaucratic dicks, and inexcusable wait times.

51

This is a limitation of my exposure to other SSI recipients. The only ones I know are at similar disability levels to my daughter, so all have rep payees (and legal guardians).

Well, no way my daughter would be able to drive a vehicle so you don’t have to worry about her. Neither would any of the SSI recipients I know of.

When we applied for my daughter’s SSI it was approved within a month of application. That was before Asperger’s was merged into autism, so a autism diagnosis carried more weight and was (as explained to us by SSA) one of four conditions that automatically qualified for SSI. We have had no SSA issues.

We have had issues with state/county services, mainly with “gatekeepers” whose job seemed to be to discourage use from seeking services in the hopes that we would just go away. Plus an decipherable tangle of services, agencies, and waiting lists to navigate…

52

Re: SSI, my experience is the same as Marvin’s. My daughter has been on it since she was six years old (along with Medicaid), and there has never been even the slightest hint that it might be taken away from her.

I am with you. I totally understand how it is! My 20-year-old daughter is autistic, with rather severe ADHD to boot. She is very intelligent, and like the OP says, you wouldn’t know she is autistic upon meeting her. After spending a little time talking to her, you might start to realize something isn’t quite right in her head. She can fend for herself and feed the cats if we leave her alone for a weekend, but as I said up-thread, I can’t see her ever holding a job.

To paint a picture (for everyone else reading):

There’s a Target in the shopping center across from our condo complex, it’s less than a half-mile walk. So let’s say she gets a job there. I envision her leaving for work 15 minutes before her shift. While walking past the ponds near the entrance to our complex: “Ooooo, ducks!” and going to investigate. Then, while walking through the shopping center parking lot, “Pizza Schimzza! I want a slice!” Upon rolling into Target half an hour late, she would be completely taken by surprise when yelled at, and she would not understand why AT ALL. Then, when they tell her to go sweep Aisle 4, she would be like “huh, I’m not doing that,” and wander over to the electronics section to look at the games. And so on and so on. Just like Marvin says, my daughter would need someone with her from the time she left the house until she got home, just to keep her on track.

53

So basically, it’s like why dogs have jobs but cats don’t :smiley:

54

I’ve been following this thread with not much to contribute because the disabled person is my granddaughter and her parents are the responsible parties. However, your post describes her perfectly!! Not a care in the world!!

55

Bolding mine. This is the subtle and heartbreaking nature of the illnesses that affect BlinkingDuck’s daughter, my son, and Mama_Zappa’s children. A component of these disorders is the crippling inability to understand and manage time that is not readily visible but makes sustained employment difficult if not impossible.

My son can carry on an intelligent, witty, conversation and can lecture brilliantly about his pet interests (if you want to know how to derive the Hubble Constant – and even if you don’t – he’ll be happy to tell you at length). But any sort of advance planning is like asking him to read Chinese. He gets paying the electric bill, because if he doesn’t PG&E shuts the power off. But doing anything that doesn’t have immediate, tangible consequences – like paying taxes or having insurance or completing work on a deadline – is incomprehensible to him. Same with saving up money for a big purchase in the future: he can’t conceive of how or why someone would do that. Completing long-term school projects was torture; they were forgotten as soon as they were assigned, and if they were remembered at all, it was the night before they were due.

As BD and M_Z point out, the level of supervision that these individuals need to do productive work is impractical, if possible at all.

For too many years, sadly, I believed the “tough love” child behaviorists and tried rewards and punishments to normalize his behavior. I thought he was just being lazy. In conversations with him and with his mental health professionals, I finally understood that it is just not possible for him to plan for “the future” like the rest of us do, that he himself is well aware that he is different in this regard, that he is trying as hard as he can with medication and therapy to see whether he can mitigate any of the symptoms, and that he is profoundly depressed about it.

My son, and the others like him, are just as disabled by their condition as victims of more dramatic mental illnesses (e.g. schizophrenia). I know this is tough to believe, given how normally many of them act in many situations. In his case, he doesn’t need the stipend, but the access to universal health insurance (praying hard for “BidenCare”) since getting him to apply in the first place, and then renew it periodically is daunting.

56

GEsancman,

I understand why many people would insist that an intelligent, but high end autistic girl, could find SOME job to do. I have dealt with this myself before I realized I was wrong. My wife’s parents took longer to understand, but they did finally see. We even had a PSYCHOLOGIST that thought so before we dumped him - not for that but other things as well. He just wasn’t very good nor all that professional. I have relatives still thinking so.

They just think that she could do SOMETHING…and they are wrong. Just some discipline and facing the consequences of her actions will teach her! They exclaim. I understand why you think that because I did to at one time…but you are so goddamned wrong it is freaking amazing how out of touch that opinion is.

I like your walking distance work example. Let’s say my daughter got a job there…first, there is NO WAY she would pass an interview…but let’s just assume she did. She would totally freak out. We would talk to her, get her used to the idea and she would become only extremely nervous instead of paralyzingly nervous. So…she would walk to work. She might even get there. I would give it an 80% chance.

She would walk in and report to her boss. Her boss would tell her to sweep up aisle 4 and the equipment is in this storage closet. She would appear hesitant and the boss would lead her there, open the door and point. My daughter would stand there and look at the mop, brooms equipment and likely just sit down and cry.

The boss would come back and be confused and ask her what is wrong. My daughter would say “I don’t know what to do!”. The boss would be confused and think “This girl is not stupid, how can she not know how to mop a damned floor! She must be faking”. Heaven forbid he scold her or be negative…that would cause THE TOTAL FREEZE UP ™ and that opens up a whole box of worms.

No, she is not faking. No, she is not lazy. It took me some time to realize it myself. Here is a girl that can write great short stories and she can’t clean a toilet when asked?!?". No, she cannot.

Even if God came down and miracle her into being able to plan out how to mop a floor (and that is what it would take), you better be EXTREMELY DAMNED LITERAL in the orders you give her. If you expect any initiative, interpreting the orders or overcome unexpected events, no matter how simple, you are in dreamland. This is the girl that took SEVEN YEARS for me to teach her how to make spaghetti. You combine her intelligence (and I am not lying…she is probably smarter than me in raw IQ) with her inability to plan or carry out ANYTHING not thought about for days no matter how simple and you just get a WTF moment .

I remember the day my wife’s parents came around. They talked to me an apologised. They used the expression “Trying to push a wet noodle” when trying to get her to do something after offering to take her for a week while we went on vacation.

57

If you ‘forced her to perform or face the consequences’, she wouldn’t.

She would sit in her place until forcibly removed. She would then just sit on the street outside until removed. If not removed or helped…SHE WOULD DIE from lack of water or food or exposure. I am serious.

She would not go for help and, if asked, would say things are fine and try to end the conversation fast.

This is a woman who will never hold a job…no matter how simple. A severely mentally handicapped person with an IQ of 50 is much more likely of holding and doing a job well than she is. Her brain just won’t allow it.

This is beyond the comprehension of most people. Sounds impossible. Hey, I hear you as I was there once myself.

58

Just read bobmoms post after writing the above. Sounds very similar.

59

I just realized after rereading that I make my daughter sound like hell. Far from it. She is a pleasure to have around. Smart, witty, fun. I wouldn’t give her up for the world.

60

I don’t think I ever wrote that autism cannot be disabling. If I did, I apologize. And I cannot imagine the challenges some of you have faced.

But what do you think of the example I mentioned? Someone diagnosed with autism, whose social worker is strongly going to bat for, but who can drive independently. This isn’t your kid getting lost walking a couple of blocks.

I welcome your opinions. While I acknowledge the kid down the street will never work, my good buddy’s 2 autistic kids are both successfully working at Amazon. Like I said - the spectrum is very wide, and each kid is different.