Help me help my disorganized family member
December 24, 2013 5:45 PM   Subscribe

I have a close family member who I am somewhat estranged from. But he has some needs that I have the skills to help with, and I want to help. Help me help him.

He has had a traumatic brain injury and also was even before that, in my judgmental estimation, just fairly flakey, and a stoner and ADHD and disorganized and unmotivated.

He's getting older and beginning to develop some health problems. He doesn't work. He was denied SSI and says that he was denied for MediCal (which doesn't make sense to me given the new system - we live in California - but more research is required here.)

He also feels that the doctors in his small community are against him and don't want to provide the care he needs. In my evaluation, I think this is possible because he is somewhat difficult to get information of - gives extremely long tangential answers to every question for example.

I am fairly organized and a health professional, so am pretty well equipped to help him sign up for health care, or to attend doctor's appointments with him, etc.

He is open to my help if somewhat defensive about it.

If he agrees, I will go to be with him for a week or so to help him get the medical care he needs etc, but am trying to figure out what exactly I should be thinking about. For example:

- First steps in appealing the SSI denial
- Getting him signed up for MediCal/and or low-cost insurance through the state exchanges
- Helping make sure he doesn't fall off in the future for failure to fill out the millions of forms and stuff that are required.
- Setting up any support available to get him to appointments etc (case management?)
- Anything else I'm not thinking of

Hope this isn't too disjointed. Thanks,
posted by latkes to Law & Government (10 answers total) 3 users marked this as a favorite
I don't have anything substantive, but I just want to say that I have heard that almost every initial SSI disability claim is denied; so, do not lose hope on that.
posted by thelonius at 6:08 PM on December 24, 2013 [6 favorites]

Perhaps find him a local social worker who can be his advocate after you are gone?
posted by JohnnyGunn at 6:22 PM on December 24, 2013 [1 favorite]

Everybody I know who has gotten ssi was denied first. It's worth getting a lawyer to help with it. He will get paid on contingency, I believe.
posted by St. Alia of the Bunnies at 6:57 PM on December 24, 2013 [3 favorites]

Consider getting him a representative payee for his benefits, when he does get them (everyone I know was also denied at least once, with one exception - a girl whose story was so extreme I'm actually not surprised she got approved the first time.)

Someone needs to get a power of attorney for him, as well - even if you call his creditors and beg to pay his bills for him, in most cases they won't talk to you without a PoA.
posted by Fee Phi Faux Phumb I Smell t'Socks o' a Puppetman! at 7:05 PM on December 24, 2013

Oh, and it's important to get the right kind of power of attorney. My PoA is the durable kind, I think it was - it's in effect now and will be unless I'm dead or I revoke it (I don't have to be incapacitated for my person to talk to my creditors, and if I'm incapacitated, it still works.) Mine has a giant list of all the things my person can do - I think I only said he can't sell my property, and checked off everything else. Which is silly in a way, because the one thing I don't have is property worth selling.

I got the text from my state's website, but any lawyer in the state he's in can help you out.
posted by Fee Phi Faux Phumb I Smell t'Socks o' a Puppetman! at 7:08 PM on December 24, 2013

I agree he needs an advocate, a week is not long enough to really get him settled in, and even once everything is set up the bureaucracy is overwhelming for a healthy person, let alone anyone with TBI or a "difficult" personality.

I had to do something similar for my husband; I would say it took two years of solid work by me - putting 40 hours a week into enrolling him in various programmes, in- and out-patient care, fighting denials, filling out "lost" paperwork, sitting in waiting rooms and retelling his health story over and over again. I am now at the point where I probably only spend four hours a week on paperwork and appointments but if I slip, like if I get ill or work seven days a week at one of my paid jobs, it can takes three or more hours of make-up work for each hour I missed in the past.

So first thing, build up your own support and arrange to spread your own burdens, as well as his, as widely and thinly as possible. The fact that I essentially had to do it alone, over my in-laws objections that my husband was not really sick - just lazy and of poor character (that I caused because they were perfect parents), meant I seriously neglected my own needs -physically, emotionally, and financially - which ended up not serving my husband well either.
posted by saucysault at 11:06 PM on December 24, 2013

I would move up the insurance issue, even before SSI, if he doesn't already have insurance. The deadline to have coverage in January (and he must have some sort of coverage by then, otherwise face penalties) has already passed.
posted by Houstonian at 5:50 AM on December 25, 2013

1) Best to start with where he actually wants help. (You may have done this already). Eseentially I'm saying ask him "So hey, I'm gonna be helping you. What can I do, where do you want to start?" This lets him keep some control and dignity in the situation; in a sense he's directing you to do something, not having to accept the charity of others. For many people, that can be a sticking point and may be why he's a bit defensive.

2) I know nothing about SSI in the states, but disability up here comes with all the information needed to appeal decisions. So probably good to get a start on that, and engage an appropriate expert as needed.

3) Perhaps a good ongoing structure/support program would involve meeting with him once a week. Wednesdays are probably good for this. Go over any new paperwork that has come in during the week and handle it. Schedule any errands/appointments for which he needs support for during the day Wednesday if at all possible. This will help avoid backlogs in forms. (And day to day bills and so on).

4) Case management is exactly what you are looking for here. Waitlists in my neck of the woods can be extreme (~12 months), but it's worth starting the process now so you can act as a stopgap measure and a bridge to a total stranger helping him manage his life.

5) Don't underestimate the importance of goal-setting. Get him to decide what he wants to get accomplished (see point 1), make sure it's reasonable/rational/realistic, and help him achieve it. Include reasonable and appropriate rewards; "Man, glad we got that done. Let's go _____." Over time, you should be able to slide him into making his own goals and achieving them by himself. Speaking as someone who does need some assistance with things, it's really important to be able to have your own independence and agency. Basically there's a subtle but important difference between "I am here to Help You," and "I'm here to help you get done whatever you need to get done, just think of me as an extra pair of hands for when you're busy," and the latter preserves more dignity I think. YMMV.

(Nothing about what I've said is to criticize you, I think you're doing a great thing and looks like you're really approaching this in the right way.)
posted by feckless fecal fear mongering at 7:57 AM on December 25, 2013 [3 favorites]

To expand a bit on my previous point, people in dire situations (I think) can usually recognize when they need help. Actually asking for such help, however, often has a lot of mental roadblocks in the way. So if you start from asking where someone wants help, you should be able to transition sooner or later into where they need help, once they realize that accepting help is psychologically safe and comfortable.

I will also note that trying to give this level of help to someone can be incredibly tiring and frustrating, which is why we have professionals who specialize. Helping people also works better when it's a network, I think, and not just one superhero. You seem eminently qualified to help with healthcare--accessing, translating (from his tangents to concrete facts), etc. Other people around may be more suited to helping with day to day stuff (shopping, bills, cleaning, self-care). Is religion a factor in your lives? If so, it may be worth (discreetly! Some people don't like when other people know they need help) inquiring around whatever religious community is nearby to see what kind of support and help mechanisms exist.

For example, I've been dealing with serious depression for a long time. That manifests as a lack of interest in self-care, and lack of interest in domestic care. Knowing, now, that there are people who are coming over from time to time, and neighbours who check in on me to see how I'm doing, helps me find the motivation to make sure my kitchen isn't a disaster and my apartment is generally presentable to guests. (Admittedly this sometimes means twenty minutes of frantic cleaning right before they arrive, but baby steps yeah?)

Having regular (but non-intrusive, and it's a difficult balance to strike) visits by friends/etc can go a long way towards helping him manage day-to-day life (I am extrapolating here from what you have said, and assuming that daily activities and needs can be flaked on. Correct me if I'm wrong, please) and ensuring that he is taking care of himself.

At the end of the day, what I'm trying to get to is the 'give a man a fish/teach a man to fish' idea. Sometimes, yeah, you can't teach, so fish need to be given.. but whenever possible, teaching will help. If he's that disorganized, something along the lines of 43 Folders could be a start. One of my plans, as soon as I can afford to, is an enormous whiteboard that I can use as an external brain. Notes of appointments, daily checklists of stuff to do, that sort of thing. This sort of strategy may help him; one of the worst things about feeling out of control of your own life is this sort of spiraling despair that leads you to just give up even trying to get control. So if you can help him achieve control in small, visible, concrete ways, that will go a long way towards helping him achieve control in more difficult ways.
posted by feckless fecal fear mongering at 9:48 AM on December 25, 2013 [2 favorites]

"I would move up the insurance issue, even before SSI, if he doesn't already have insurance. The deadline to have coverage in January (and he must have some sort of coverage by then, otherwise face penalties) has already passed."

Just as a note, if you qualify for MediCal, there is no deadline. Well, there's still a deadline for effective coverage, e.g. March 15 to have coverage start April 1. But MediCal enrollment is rolling, as distinct from other health plans.

(If you want, the place I work has certified health care navigators for California, and we got a grant to enroll people, so you can hit me up and I can have someone do this all over the phone or in person, depending on where he is.)
posted by klangklangston at 1:03 PM on December 25, 2013

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