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

In My Humble Opinion
21

The general idea is to hire a trust management company to manage the trust. Not your 3rd cousin twice removed Vinnie who’s supposedly trustworthy. And not Sam the solo CPA nor Sally the solo attorney.

My wife and I don’t have any dependent concerns nor handicaps (yet), but our trusts have our CFP as the backup trustee if both of us are deceased or incompetent. That’s an outfit with a large client base, regulatory oversight, licenses on the line, malpractice insurance, internal controls, and all the rest. I’m betting my old age on them being honest in managing my affairs when I cannot. And properly distributing what’s left when I am gone. Given the rest of their situation, that seems a safe enough bet, and about the safest on offer.

The larger concern about a bigger business is how individually responsive they’ll be. They are not the answer to the question of who will get my scooter fixed or my windows washed or get me to my doctor’s appointments. That sort of “facilitator short of legal guardian” is a service I’d hope to find before the need arises.

22

“That sort of “facilitator short of legal guardian” is a service I’d hope to find before the need arises.”…Yes that was what I was talking about.

There is also the fact that the State is CONSTANTLY trying to get her off disability. It was a huge deal to get her on and, without our help and stubbornness, she could never have herself. They are CONSTANTLY sending letters through regular mail with “You must respond within 2 weeks or be removed from Disability” letters. EVery 3 or so months it seems. Guys, seriously…she will be on disability her whole life. Things won’t change every 3 months. Stop being dicks.

It makes me very angry. The people that most need disability probably get kicked off all the time. I mean, I want to punch faces. THE REASON SHE IS ON DISABILITY IS BECAUSE SHE CAN’T DO STUFF LIKE THIS…and you send her 'GOTCHA!" stuff all the time. F or Fuck’s sake, if you don’t want to offer disability to people that need it…then don’t. Don’t do this “We have a safety net but we kick off people that we can even if they need it by preying on their disability to get them off”. My wife and I are very observant of these “Gotcha” letters, but my daughter won’t be.

23

Ouch! If only we had a government that worked, not one that was mostly a con designed to pretend that it works. At least at the stuff that’s good for the citizens, not the fat-cats.

If your daughter is legally competent, then she’ll need to sign the various letters, etc., even if somebody else has to help her understand her need to sign them. If she’s not legally competent then whoever is her guardian will be signing on her behalf anyhow.

You may find yourself in a situation where it’s to her advantage to be declared incompetent and a guardian appointed even though she’s not really, or not quite. The laws on this vary by state.

There are outfits called “trust companies” that specialize in doing just this sort of paperwork-based guardianship. Lots of real estate escrow companies have “trust” in their business names, but this is not that.

Another alternative is to look into small CPA firms. There are firms that specialize in this stuff, more aimed at elders. Another idea is there are people who do “full-time” RVing who have no fixed address. They hire a service to receive and manage all their snail-mail. Before the widespread availability of online banking, this was often a service sold by small CPA firms. But it’s still needed for the few things, like mail from the government, that can’t be handled online.

As to the practical stuff, it may be unrealistic to expect your daughter to live in your single-family house after you’re gone. A condo, an apartment, or a group living facility (so-called “independent living”) are alternatives that each incrementally reduce the burden of stuff the person needs to do for themselves on a daily, monthly, or annual basis.

My aged MIL moved from house to apartment to independent living as her physical and motivational capabilities faded. The majority of independent living residents are elderly, but there are middle-aged folks who’re there too by virtue of either physical infirmity or mental / psychological shortcomings.

So Mom has a 1br apartment, basic maid service, 3 cooked meals a day, a medical clinic down the hall, and someone to check on her every day. And various physical services are readily available, from scooter repair to furniture repair to hearing aids to …

Surprisingly, this is not materially more expensive than an ordinary 2BR apartment on the local economy, especially after you factor in not paying for utilities or groceries or at least some transportation. It’s also a LOT less lonely than living alone in a house or apartment.

24

I’m watching this with great interest - as we’re in much the same boat. Dweezil is 26 and is high-functioning autistic. Moon Unit is 23 and has mental health issues, as well as a mild seizure disorder. Neither is intellectually impaired but neither would do well on their own.

Neither is formally qualified as disabled though I want to pursue this with Moon Unit. She’s actually living in an area right now where she could probably pay the rent on SSDI; she is working part time, and we’re subsidizing her rent. Sigh - I wanna work 2 days a week and have someone else pay a chunk of my living expenses. We actually considered buying a condo for her in the town where she currently lives; she doesn’t want us to because she doesn’t want to live there forever (though she isn’t taking steps to help herself move on, either). We backed off that for the moment, as the only condos that are walkable (she does not drive, and refuses to get her permit) are too spendy, and the HOA dues and taxes would more than triple the cost of the actual purchase.

Dweezil held a job at the local grocery store for several years - and while he didn’t get rich from it, he would probably make too much to get any disability or other assistance if he went back to it full time. Not enough to live on, mind you - we’re in a very expensive part of the country. I just posted a thread yesterday about navigating the Medicaid / healthcare dot gov situation; he would NOT have handled this on his own. And this is a kid who has gotten within spitting distance of graduating college. Moon Unit actively fights any help - it took me 6+ months to even get her to apply for SNAP (luckily, the residential community she was in for several years got her enrolled in Medicaid).

So: someone who is not so much a guardian, but facilitator, is exactly what is needed for my two kids - exactly as you describe.

I did get Moon Unit to designate me as an advocate on the SNAP application - if she takes care of sending in that form (sigh). Dweezil did give them my info on the Medicaid application, also. I’m debating whether to have him try for SNAP - I think technically he qualifies, but when he’s here he eats our food, and when he’s at college he has a meal plan that covers most of his food costs, so I’d feel weird about it.

Re the house: One thing that surprised me about a special needs trust is that it cannot pay the person’s rent - but as I understand it, the trust CAN own property for the resident to live in. When you meet with an estate planner, make sure you understand what do do about this trust to make sure it’s phrased appropriately - and you’d need to will the house to the trust, not to your daughter. You’d also need to leave all your other funds to the trust, vs directly to her.

Contact the local autism society - they may well have information on how to find such a facilitator. I gather they can even act as trustee, though there are fees involved. My brother and his wife actually purchased a “second to die” life insurance policy to fund my nephew’s trust find - he’s much more severely autistic and in fact lives in a group home. I rather wish we’d gone with that approach but we’re now likely too old for that to be affordable.

We’re in a similar boat re not having anyone to support either kid. The nearest relative is 140 miles away and we don’t speak much; the next obvious person would be my brother - who is older, lives 700 miles away, and has special needs kids of his own. His older daughter could do it but she’s also 700 miles away, has her own family, and will inherit guardianship of her brother when the time comes.

On the trust: We’ve written Dweezil’s special needs trust so that if he’s ever self-supporting for 2+ years (or is married and he and his wife are self-supporting), it can be dissolved. I think there may have needed to be some language regarding when the trust could be dissolved, so that’s what we opted for. We had a trust for Moon Unit (we were gifted 10K each from an elderly relative); that had to be written as being disbursed at a certain age - at the time we set the trusts up, we did not think we needed a special-needs trust for her. That would have disbursed when she turned 25 - though we had it liquidated to pay some of the costs for her residential care, so it’s no longer an issue.

We do need to look into an alternate trustee - or simply set up a different trust - as neither trust grew in value at all with my BIL as the trustee; after 18 years, each was worth just a few hundred dollars more than when it was gifted.

What you say about the disability people constantly trying to boot her off the rolls is a bit frightening :(.

25

Yes, Frightening.

I make the joke that if someone loses both arms and legs in an accident, they will demand verification within 2 weeks every 3 months because maybe the arms and legs grew back? We need verification that they haven’t grown back!

High end Autistic doesn’t ‘get better’ just like arms and legs don’t grow back. Stop being dicks.

It also makes my moral outrage ramp up. How many disabled people are kicked off because they don’t have someone around to deal with their shit? If my wife and I died now and her grandparents died as well (which will happen very soon as they are pushing the end), she would lose her disability within a year tops, and likely within half a year because her disability makes her not able to deal with it and because she doesn’t she is kicked off. Grrrrr, my blood pressure is going up writing this.

26

Oh lord, BD, you have described my life. I don’t have much to add to the advice of others, though perhaps you can explore hiring a “fiduciary” (Estate Planning) as a trustee if you have no relatives who would take on the responsibility (IMO, a trustworthy relative is the preferred option).

My 35 y.o. son has Aspergers (just recently diagnosed; it wasn’t a “thing” when he was small). He has never held a steady job and now with COVID I don’t think he will be employable again. He will lecture you for hours on astrophysics, but among other quirks, he will not remember to go to the mailbox, and unless I hand each envelope to him, he will not open them. If he opens them, he will just set them aside unless I prompt him to respond. He won’t remember to renew his driver’s license or insurance or file his income taxes (he has a small income from an inheritance) on his own. Your description about the state (what state are you in? I’m in California) sending gotcha letters to remove your daughter from disability is terrifying. If we are ever successful in getting him on SSDI then he’s going to have to be a lot more vigilant about his mail.

I have had my lawyer construct my trust so that my daughter (his sister) is trustee of his half of my estate when I die and can put him on an allowance. Luckily, she is OK with that, and they get along well. He lives in an in-law unit in my house, and the trust gives him the right to live there as long as he wants to, with my daughter in charge of maintaining the property. The trust is worded so that if he no longer needs to have the trust control his assets, my son and my daughter can agree to return his portion to his control. I honestly don’t foresee this happening.

I’ve tried to explain to him that while his small inheritance will allow him to lead an adequately comfortable lifestyle, he will not be able to support a family on it. I have begged him to get a vasectomy; my worst fear is that he will impregnate a girlfriend and then be on the hook for child support until he’s in his mid 50s. I’d like to know how the rest of you in this situation manage the birth control issue.

27

Minnesota.

As for grandchildren, one of the aspects of her disability is a complete lack of interest in sex. When she was 15 or so she expressed a little interest in dating but it quickly died. It makes an interesting dynamic (she is now 27) because she is gorgeous. I’m not saying it as a dad and with bias but she is …very attractive…to the opposite sex. I don’t know where she got it from. Guys flock around her like crazy but completely not interested in dating or sex or anything like that.

28

Oh wow, it looks as though you have dodged a major bullet, though she’s still vulnerable to rape. My son, OTOH, is a real hunk, very attractive, very interested in females, and may be an easy mark for someone inclined to manipulate him sexually.

29

In Dweezil’s case, I’m pretty sure he’d have to TALK to a girl first, so I don’t foresee this being an issue any time soon. Which is both a relief, and a worry.

In Moon Unit’s case: as long as she continues taking her birth control pills (prescribed for acne and for cramps, vs their official usage) she should be OK. I’m reasonably sure she has not done the deed yet, as well - but you never know. She does not want to have children, in any case.

30

I understand your frustration, and (in this thread) I express no opinion on what benefits your daughter or anyone else ought to receive. (Professionally, I express such opinions daily).

I don’t know if it would affect your perspective, but you may not appreciate the situations of everyone who is receiving disability benefits similar to your daughter’s. There might be reasons for the repeated communications - other than a desire to be dicks and deny deserving people their benefits.

-While people do not “grow out of” autism, some people on the spectrum do attain the ability to provide for themselves. You know what you believe your daughter is capable of. The government may not. And not everyone who receives disability benefits avails themselves of all of the resources which might reduce their need for such benefits.

-Moreover, my personal experience is that a great many (by no means all) people seek and receive benefits, when IMO, they do not fit the strict definition of disability. IMO many of them are capable of some simple, repetitive work. And - again IMO - I have long since ceased to be surprised at the extent to which well-intentioned parents will enable their children who have some limitations which are not necessarily work-preclusive. While the contacts you receive may impress you as excessive, as a taxpayer, I feel there is some benefit in a benefits provider conducting periodic reviews to ensure that disability/eligibility continues.

-You mention being interested in something “short of legal guardian.” Am I to assume you are not your dtr’s legal guardian? If not, the state is REQUIRED to deal with her. She is an adult, presumably competent to handle her affairs. Doing otherwise could likely be a violation of her privacy. If you feel she is incapable of handling her own affairs, than you certainly can (and IMO should) take efforts to have a guardian appointed. I imagine it would be frustrating to try to have things both ways.

-Over the past 35 years I’ve handled disability cases arising in several states. IMO&E, the services Minnesota provides people claiming disability exceed any other neighboring state - tho WI may be close. (I’m a crazy far-left liberal, and I’m astounded at the $ MN spends, people they employ, and services they provide.) So it likely won’t provide you any comfort to realize that if you moved to IL, you’d have it much worse. And a great many people (not you, I’m sure) style their situations to maximize receipt of such benefits. In that context, I feel some ongoing reviews are appropriate.

Sorry if this is not what you had hoped for in this thread. But I’ve spent my career in the government doing disability related work, and have yet to encounter any employee or policy that was aimed at dickishness. I can understand your frustration. I would not have posted any of this had you not made the repeated characterized the state employees as “dicks” trying to “gotcha” ya.

31

IANA the OP, but I would more suspect the Legislature or Executive being at fault than individual state workers.

My wife was an ALJ for her state’s unemployment insurance division for a few years. She was tasked to ensure everyone got what they deserved under the system, and that neither employers nor employees got mistreated versus the rules. Her specific job was to hear appeals when either employer or employee thought they were being mistreated versus those rules, render a decision, and then to order the appropriate remedy.

But the system was “rigged” by the legislature and the ensuing regulations to be as difficult for the applicant as they could get away with and still claim to be supporting their unemployed citizens. The department was also starved of resources to operate the program. Thereby triggering months-long waits before a required hearing could be held. During which time benefits were denied because that’s what the regs demanded. etc.

Yes, there are cynical scammers among the populace. But when the legislature creates an equally cynical and scammy system that claims to do X but really does 50% of X because nudge nudge wink wink it’s sooo much cheaper that way, one loses respect for one’s government. Though not necessarily for the workers doing the thankless task as best they can.

32

Your opinions and experience, which I cannot disagree with. And I have far less experience w/ state than fed disability.

My suspicion is that the overwhelming majority of fed disab cases get properly decided. Many people complain of delay - and some are overly delayed. But I believe many people fail to appreciate the time needed to process claims through a large disability system. Everyone feels THEY are being honest and participating perfectly, but not everyone does, and once someone gets granted benefits, it can be very hard to get them off.

I regularly hear people complain of how SSA screwed them over. Which may be true. I’m sure it occurs. Mistakes happen.

But I have personal experience of many many (tho admittedly, a small percentage of all) applicants/recipients who are uncooperative, clearly dishonest, or simply looking for cash w/o needing to work. My personal opinion is also that the claimant’s bar has an improperly large say in rulemaking, and far too much of the process is intended to benefit attorneys/representatives.

33

I am only slightly acquainted with SSI SSDI, but this quoted tidbit sure comports with what little I do know about it. There’s an awful lot of rent-seeking out there, and not all by the work-shy.

34

In fact, in the last couple of years, the hearings backlog and wait times have been reduced drastically. Guess where some resistance has come from? Is it coincidental that rep fees are generally based on a percentage of back benefits, such that increased time = increased potential fees? :smiley:

No, I’m not the least bit cynical… :wink:

35

Anecdote != data, of course, but if you mean “decided properly the first time” there are a lot of stories suggesting that this is not the case. Our own Doper, Quasimodem, was denied on his first attempt (despite having been diagnosed with early onset Alzheimer’s).

It’s hard to find solid stats for totals of people who apply, and then appeal and are successful on appeal. One site stated that about 1/3 of applicants are awarded disability on their first try, and of those who appeal, their first appeal only grants disability to about 13% of the appelants. It doesn’t say how many of those rejected actually appealed - e.g. if you have 300,000 applicants, 100,000 of them got disability, 100,000 went away, and 100,000 filed appeals: that’s another 13,000 people (13% of the 100,000). So a total of 113,000 people got disability. If half of the appelants who were still denied, or 87,000, then went before an administrative law judge, 62% (per one site) will receive disability after that. it’s another 26,970 recipients. For a total of just under 149,000 recipients versus the original 100,000.

I honestly don’t know whether my daughter will qualify or not. She does have known mental health issues for which she is being treated - that lets her sort of function. She also has a seizure disorder, a mild one fortunately (and which literally saved her life, as the meds she was put on for that helped her mood issues). But she self-sabotages in a lot of ways. It’s beyond sad seeing this very brilliant kid working as a part-time janitor, talking about creating things but never doing it : :cry:

Interesting take on the delays on appeal and increased fees for the representatives involved. I can’t say whether that’s true or not. Even if the representatives are not directly causing the delays, they are likely contributing to a higher volume of appeals in general, hence some delays from that alone. I suspect that right NOW, things are delayed in general due to COVID.

36

So many of the “kids” we are all discussing here show some truly awful executive functioning issues, even if they are not disabled (or not disabled to the point of needing SSDI etc.). Some examples with my son:

We asked him to call about Medicaid, on Monday. After much nagging, he finally called Tuesday at 3:15 PM.
It took me 3 tries to get him to come in and look at the healthcare dot gov application with me
He was taking classes at the community college (before going away to university). We spent weeks reminding him to register for classes for the spring semester. He did it at 11 PM one Sunday. An hour later and he would have blown his chance at finishing up his AA degree that year.
This semester, he got behind on email and missed a notice about a test that was worth 50% of his grade for the class. He saw it the next day. He’s now sporting an F in that class and has to retake it in the spring. Sheer dumb luck that it’s one he can take then - if it were a fall-only class he would have lost an entire semester.
His first semester away, he got a C+… in Phys Ed. Yes, PE - where basically you have to show up on time and try, to get a good grade. He FORGOT ABOUT THE FINAL PROJECT and thus got a zero in it.

And I’ve been trying to get my daughter to apply for SNAP for ages. She actually has Medicaid, and her income is low enough that she absolutely qualifies for SNAP, but she can’t be bothered to finish it up. I finally did the application online FOR her, and emailed her all the info and said “you need to update these specific items”. A month later she had not done it. 10 minutes work, and she’d be saving a chunk of food money. If she doesn’t do it soon, we’ll have to completely restart the application (it expires after 30 days)

We gave her her passport, birth certificate and social security card. She asked the people at her program to keep them in a safe place. When she left the program, they found the documents and mailed them to her. She never got them - claimed the program had lost them, or never mailed them. So when I visited her in October, I brought another BC copy, and took her to the post office to apply for a replacement passport. We found them all the evening before that, in an envelope on her table (but the passport had already been cancelled, so…)

Anyway - a facilitator or whatever, to keep up with essential paperwork, would be a huge thing. 2 hours a week. Sounds like a job opportunity for someone with a bit of spare time and some organizational skills.

37

FWIW, I’ve worked for SSA my entire career, and could not clearly tell you what the function of the disability programs is. But if you think it is intended to provide for the most needy, you are surely mistaken.

Also, FWIW, IMO if the law were applied as written, far fewer people would receive bens than do.

But I’ve never seen “intentionally being dicks to deserving people” as a motivation.

And I agree the numbers are opaque. But what makes you think a certain percentage of applicants “ought” to receive bens at any particular level, based on the record as it exists?

38

Not “ought to receive”, as such, but I’m assuming that if someone appeals their decision, and the appeal succeeds, then they have been found to meet the criteria. It looks like that first appeal is by someone at the same level as the initial reviewer, whereas the ALJ is sort of like bumping it upstairs to the supervisor. Just guessing here, of course, but I would guess the ALJ has been doing it longer, is more familiar with the rules, etc.

Interesting about the “fewer people would receive benefits”. Are reviewers exercising more personal judgment vs letter of the law, or something?

And “most needy”: not sure what that means. I don’t think SSDI is means-based, and I am guessing that the recipients who DO get SSDI are the ones who have best demonstrated that their disability meets the requirements.

Not being argumentative - I am genuinely curious about the process and procedures. As noted, we’re looking into our daughter trying to file for SSDI. I don’t love it - I’d rather she become a contributing member of society, and she COULD, but something about her mental makeup stops her from any kind of self help. It’s also not a luxurious life she’d be getting - looking at the numbers, she’d be able to make rent in a cheap part of the country, with not a lot left over for anything else.

39

Oh yeah. And the present aggravation in dealing with the issue is exceeded only by the anxiety of knowing you will not always be around to avert disaster. Sorry that you have two cases to deal with, it’s bad enough with one.

40

Good questions. I’ll provide a short personal response - stressing that IN NO WAY DO MY OPINIONS/VIEWS REFLECT OFFICIAL POLICY, nor are they expressed in my official capacity. I’m just some schmuck private citizen on a message board, and didn’t mean to start a long hijack.

Briefly responding to your questions/points in order:

  1. A finding of disability under the regs is largely based on medical evidence. Personal allegations alone are insufficient. This causes the system to struggle to deal w/ people who lack access to care, as well as conditions - such as migraines, fibro, many psych - which are poorly corroborated by objective testing. A lot easier to prove disab if you have cancer, undergo surgery and then chemo, the cancer recurs…

Anyone can file a claim for disab bens. And can appeal it to a hearing. Do you have any idea how many claimants come to hearings and say they had to take time off work to appear? So do not presume that everyone who applies/appeals is disabled - however you define that.

If a person files a claim, but does not supply much in the way of medical support, they are likely to be denied. At each stage of the appeal, the record gets developed more. Moreover, a person’s case may change over the time between application and hearing. Their condition could worsen, or they could get hit by a truck. So the record on which an ALJ might pay a claim is different from the record on which it was initially denied.

  1. IMO, the percentage of claims that are paid following hearing (approx 42% nationwide IIRC - some individual ALJs as high as 80% or more) can only be explained by ALJs relying largely on their own feelings of sympathy or other factors beyond the evidence of record. I think it a very dangerous proposition to rely overmuch on one’s feelings like that. I’ve paid child molesters, murderers, whatever. If the evidence supports their claim, it doesn’t matter how despicable they are. The flipside is also true. Nearly EVERYONE who appears at a hearing is sympathetic in some respect.

  2. I agree - I do not know what “most needy” means. But the only thing I see the SS disab system as doing is figuring where people fit in a complicated framework of pigeonholes. Really does not serve any specific social goals as far as I can see. A great number of administrative “lines” place people in various categories, yielding results which may not reflect your opinion of the individual’s needs/merits. But if an ALJ does not follow the “lines” - what are their decisions based on? What consistency does the system have?

Also, a lot of claims represent fee-shifting. Workers who are on longterm disability thru their employers are required to file for SS, w/ any benefits paid going to the insurer. Similarly, states try to get the feds to offset their expenses.

A couple of final points - many people fail to understand that if they can perform the crappiest, most boring, lowest paid job out there (considering their age, etc), they are not disabled. It may not matter if they are unable to do their past work, or work they want to do. So yes, most parents would prefer not to think of their kids toiling away as janitors, or minimum wage workers. But if they can - physically and mentally, they ought not get SS disab bens.

One thing that often strikes me is people who have made no attempt to work. Never contacted their state department of voc rehab. Never tried a part-time job and got fired. In fact - never even looked into a subsidized health care clinic. And then there are the families that are entirely supported by someone’s government benefits - often multiple disab bens. While it is not likely a majority of cases, there is a percentage of cases in which claimants impress me as lacking motivation. Some people attempt to work despite amazing health problems. Many others don’t even try to get off the couch. And many (by no means all) parents impress me as not making sufficient effort to get their kids’ asses off the couch.

Dependence on medical opinions is a significant issue. A medical opinion must state specific limitations - not a conclusory opin of disab - and must be based on sufficient evidence - treatment over time, findings, observations, test results, consistent ongoing complaints… I perceive many (not all) medical practitioners are very eager to diagnose and treat pathologies. I see the same DR names over and over. The pain management clinic that provides grotesque numbers of injections, astounding prescriptions of drugs, and mental health professionals readily diagnosing pathologies based on nothing more than an initial interview. It is really sad when you see an ortho surgeon jump into spinal surgery w/ minimal reason. And guess what - it doesn’t help!

Final point - there are a lot of really good disab lawyers. Unfortunately, there are also a lot who are not. Realize that their fee is contingent and fixed, so they have an interest in doing as little as they can get away with to collect that fee.

Hope that provides some perspective. I’ll likely bow out here. I do not wish to offer my personal opinions re: aspects of the SS disab program.

My sole reason for rejoining was to disagree with the characterization of govt employees as dicks who have nothing better to do than hassle deserving citizens.