Concerned about future of young person with learning disabilities
December 28, 2011 6:38 PM   Subscribe

I am concerned about the future of my young relative with learning disabilities.

My young relative-in-law is a great kid in his mid-20s. He has an assortment of learning disabilities (without a very specific diagnosis, to my understanding) that center around difficulty with reading and writing, sequencing events or instructions, math, etc. His social skills are good, and he is a warm, kind person. He lives at home with his parents and is working on learning to drive.

Young Relative has a job as a low-level retail clerk job at a big box store, which is where he has worked since leaving high school (spec. ed, no diploma). He is a very reliable employee, but would like to plan for a different kind of work in the future.

The plan recently hatched by Young Relative and his parents is that Y.R. get a GED and follow that up with a health-related associate's degree. There are good career prospects in that field and the pay would theoretically allow independent living.

My concern is that there's maybe some shared delusion happening here. Y.R. has what look to me like pretty severe difficulties with basic academic work, difficulty parsing language, comprehending texts, arithmetic is very difficult, etc.

Y.R. also has very good skills at reading body language that can sometimes mask some of these things, as he guesses at what you want to hear.

Y.R. and his parents seem to be in denial about the real odds of being able to pass the GED. Example: I asked about his math work in high school and was startled to discover that he did no work with multiplication at all, let alone anything more advanced. I did some very preliminary GED language problems with Y.R. and he was unable to identify a pronoun, even after having it explained a few times. That kind of stuff. To me, this seems like a GED is maybe just not within reach.

And yet the family believes that the GED is a realistic, attainable goal, to be followed by two years of college-level coursework. I'm really questioning this. I hate that I'm questioning it, but... I am.

There may be other stuff at play here (Y.R. is part of a family of high-achieving nerds with professional careers, I think Y.R. is socially isolated and would probably blossom if he could move out of the family home, Y.R. is a late-in-life child of parents who are retirement age.) but the basics are that I worry that Y.R. is chasing a goal that just isn't realistic for him.

Okay, now you probably think I'm a jerk. I know on the one hand, this is none of my business. But the reason I'm worried (beyond the fact that I like Y.R. and want him to have a good life and be happy) is that Y.R.'s parents are getting older. I have hesitantly tried to talk about who will take care of Y.R. when they're gone if he isn't living independently at that point, but I don't really know how to bring these things up and I think the family also (for understandable reasons) probably doesn't want to talk about it.

But the real rub is that Y.R. is much younger than my spouse and I. Even if he comes to live with us - as I assume he will, if he doesn't live independently - he will almost certainly outlive us. Are my children to then assume care of Y.R.? If that's the case, don't we need to plan for this now? How are we going to pay for this? None of us are rich.

Apologies for the length of this question. Tl;dr: I am concerned that a young relative with (moderate? extensive?) learning disabilities is chasing a career pipe dream, and in doing so is squandering the last chunk of time his parents are alive/healthy/have energy to help their child pursue a sound plan for the future.

This is in New York state. I would take any information you have: I don't know where to start researching any of this. Thank you.
posted by anonymous to Work & Money (13 answers total) 3 users marked this as a favorite
 
Has he had any previous contact with vocational rehabilitation?
posted by dilettante at 6:58 PM on December 28, 2011 [2 favorites]


I think Y.R. is socially isolated and would probably blossom if he could move out of the family home

Let's not put the cart before the horse. He can get more social interaction while still living at home--does he go to dances, mixers, social events with peers (need not be LD, can be neurotypical)?

I'd be greatly surprised if his parents are not consumed on a daily basis with the concern of "Who will take care of YR when we're gone?". Just because they're not sharing with you doesn't mean they're not involved. Most parents of these kids worry about the future all the f'ing time. Why do you think you're the automatic caretaker of choice?
posted by Ideefixe at 7:18 PM on December 28, 2011 [2 favorites]


You mentioned he has no definite diagnosis - was he in special education at all in school? Is he under a specialist's care? It's usually easier to get services when there's a diagnosis, so if the parents have just been muddling along until now the first step would be to have a diagnosis in place. Vocational Rehabilitation would be the place to start.

I found this link to the Learning Disabilities Association of New York State resources for adults with learning disabilities.

Have his parents specifically said that you and your spouse will be YR's caregivers? Has he asked to live with you? Is there anyone else who could help? Most parents in YR's position do worry about what will happen when they're gone. What they often lack are a sense of options other than "we'll care for him until we drop and then one of the siblings will and we hope he won't outlive them." For all you know they may be desperately researching the options.

Definitely help if asked and/or your help will be well received; his parents may not be aware of all their options and that might be something you can help with.
posted by Rosie M. Banks at 7:25 PM on December 28, 2011


Even if he's not able to succeed at his goals for further education, I'm not sure why you assume that a person who is capable of holding down and performing well at an entry-level job would be incapable of living independently and will eventually need someone to support him--financially and otherwise.

There are lots of people who support themselves working as retail stock clerks, food service, and other low-paying jobs, and they don't need someone to take care of them or pay their way. It may not afford him the lifestyle he is accustomed to, but there's probably a way to make it work when the time comes.

I'm also not sure what sort of alternative "sound plan" you think he should be pursuing instead of the GED. If he's not up to the academic demands of the GED and community college, for example, he'd also be a poor candidate for something like an a trade apprenticeship.

I don't mean to sound harsh--you are a good person for being so concerned about his future. But if even his GED is a pipe dream, then (a) there's not a lot of job opportunities out there for him but low-skill work. There may be other lines of work that he would *enjoy* more than his current work (perhaps he'd like landscaping, or food service work, or something else), but it's generally not the kind of work that one has to plan for extensively to secure.
posted by drlith at 7:29 PM on December 28, 2011 [2 favorites]


Yeah, this is exactly what your state department of vocational rehabilitation is made for. They help people with disabilities get an education (within their abilities) and a job. I believe they can even help out with resources for places for him to live. It varies from state to state, but just Google "(your state) Department of Vocational Rehabilitation" to find it.

Also, encourage his parents to request school records, including any psychological testing and IEPs, if they haven't been keeping that stuff all along. Schools in my state keep those records for a finite number of years, and then they're destroyed, and that type of evidence of a disability is so important when you start dealing with DVR.
posted by christinetheslp at 7:39 PM on December 28, 2011


Bluntly spoken -- the "delusion" that I see going on here is your assumption that you and your children (WTF?) will eventually be responsible for your young relative. Get rid of that delusion and there's no problem here for you to solve. Since you're a concerned relative, it might be nice for you to offer to help tutor him, or even to ask him and his parents if they'd like your help in identifying resources that might be useful for his future. They'll either accept your offers or let you know they have them covered, and then you can proceed from there. If you have not been the one going to his IEP meetings -- I am guessing you have not, since you don't even know if his learning disabilities are moderate or extensive -- you are not the one who is best able to assess what constitutes an "unrealistic" career aspiration. (And if indeed he fails the GED -- why, then he and his parents will see that he needs a GED prep course, and they likely will not need you to point that out.)
posted by Wordwoman at 8:51 PM on December 28, 2011 [1 favorite]


I would say don't sweat the GED/career plan. If his skills are as low as you describe, it will naturally fall by the roadside after a few months of trying. The family is probably well familiar with having to adjust expectations in the face of reality and will have their own way of coping when this happens. (In other words, it probably won't be experienced as a disaster unless everything else in his life that hasn't worked was also a disaster, which it doesn't sound like.) Also, he is having daily life experience with his parents - his career plans don't "use up" his time with them, it is just what they do together while living.

I think it might be very helpful to have a conversation with the parents, expressing your concern for his future and your willingness to be there for him in whatever way he might need when his parents are gone. That should invite a conversation about their plans (or reveal the lack of any)

Also, if he is making minimum wage and holding down a job, he can probably handle living in an apartment on his own, with some training and some on-going support (typically around money, insurance or major decisions). If his parents are professional class, then they may be able to leave him enough money that when added to his wages, he would be able to afford a comfortable standard of living. If he works all his life, then he will (politics willing) have social security to support himself in his own old age. If you would be willing to help him with things like making a budget, paying bills etc. (a modest time commitment for a family member you care about) as well as include him in family events (might as well start now!), then you could make a major difference in his future life, have a rewarding relationship with a special person at a reasonable cost to yourself and your family. This doesn't have to look the same way as his current living arrangments.
posted by metahawk at 10:42 PM on December 28, 2011 [3 favorites]


One, so what if he fails the GED? He is no worse off than he is now. At least this gives him a goal to shoot for. Two, why do you assume there is no plan for his future just because you have not been included in the discussion? There could be. And, if there isn't, how are you going to plan for it when you have no idea what his expenses and needs on a day to day basis are.
posted by JohnnyGunn at 10:57 PM on December 28, 2011


WordWoman, Rosie M Banks - I assumed, reading the question, that the relative is in fact Anon's husband/wife's younger brother, and therefore it is pretty reasonable to assume that they are going to be his caretakers if he needs them. For the sake of more useful answers, what are your responses if this is in fact the case?

(Anon: you can email the mods from the contact page to have them post clarifications here if you think you left something out that will help get more useful answers)
posted by jacalata at 1:20 AM on December 29, 2011 [2 favorites]


it is pretty reasonable to assume that they are going to be his caretakers if he needs them

Given that the young man's parents are educated and perfectly competent, it is more reasonable to assume that they have it covered. The OP should check out his assumption with the parents before taking any role other than that of friendly, supportive relative.
posted by Wordwoman at 6:27 AM on December 29, 2011


I don't have a lot of experience with people with learning disabilities but I would be more concerned about someone with the opposite set of problems, as in someone who could perform well in an academic setting but does not have social skills. I struggled with math but I still think it would be a lot easier for me to learn math than learn what to do in social situations.

Maybe it will take longer to pass the GED than his parents think. So what? He might get frustrated and burnt out but he could come back to it. Education is usually more challenging to pursue as one gets older but in most cases, it's a door that's almost always open. I don't think he'll ever show up for the GED test and be told he's too old to take it.

I understand your concern about who will care for this relative in the future. Maybe his parents have thought about it. Maybe not. But it sounds like this relative already has a lot going for him. If you did need to help him out, it sounds like there's a good chance he could get a job. If you had kids, he could conceivably help take care of them so you and your partner could work. Maybe the academic stuff is a longer term goal but it doesn't sound like it's never going to happen.

I realize I'm an outsider on this but I wouldn't be so concerned if I was you. What does your partner think? I know your relative has a job but if he's interested in health care, is there any way that he could volunteer in the field or intern? If I were looking at his application at a community college or as hiring manager in health care, I would feel excited about an applicant with experience in the field. A degree would help but having experience would show me that he knows this is what he wants to be doing and that counts for a lot.
posted by kat518 at 7:12 AM on December 29, 2011


I have a relative-in-law in a somewhat similar situation (though independent living and employment are not on the table at this point, so take that into account, I guess.)

It's a big deal, and I don't want to downplay that, but it's also really different for someone like you (and me) coming into the story halfway through, so to speak. It's okay to ask questions, especially to your spouse, about things that are unfamiliar or confusing to you about how Relative's situation is being handled. I didn't magically know everything about how my Relative's life works, but that's natural! I'm still learning, and of course meanwhile my Relative's situation is evolving too.

Especially if your Relative was in special education growing up, it's possible that his parents are tapped into a range of resources to help him access training, employment, and living arrangements. My Relative recently passed the magic 21-year-old barrier out of school district services, which is a hard transition (because the school district was the road into a lot of occupational therapy, social events, job training, etc.) But even now, there is a whole hoard of people outside the family involved in his care - including people who basically serve to help figure out how to access all these services. Hopefully your partner's parents aren't going this alone either.

The two biggest things I've learned since knowing my partner's family are 1) there are a lot of options and 2) things change. It's not a choice between being entirely housed and cared for by a family member and living in total independence, or between an unsupported (if low paying) job and sitting at home. And those in-between solutions aren't failure, they are solutions - accommodations and adaptations that let Relative have a fuller life.

As for #2, metahawk's point is a really good one. To me several years ago, failing the GED would have sounded like a disaster - how is anything going to be okay if he can't pass highschool?! Passing the GED might or might not be realistic for your Relative in the end, but pursuing it aggressively might be a smart decision for the family right now. Maybe it will take him three years and require special testing accommodations, but the certificate will wind up helping him reach more job opportunities. Maybe it will be too hard and they'll give it up in six months. If the goal changes, the goal changes. I've been around for similar 'expectation adjustments', and I won't say it's not hard, but none of them have been the end of the world yet :)

Ok, this was long. Sorry for things you already know or that aren't relevant for your relative. tldr: ask about things you don't understand, and stay flexible. If you and your spouse will be more heavily involved in Relative's life in the future, now is a great time to start learning more and thinking about the whole range of ways things might play out.
posted by heyforfour at 7:41 AM on December 29, 2011


Putting aside the GED issue and whether or not you and your husband will be his primary caretakers eventually, maybe you would start to feel more comfortable educating yourself on what services are available for people in your relative's situation? Vocational therapy, mentioned above, is a great place to start, organizations that support folks with moderate-to-severe learning abilities, etc. You'll have a better idea of the service landscape so if this eventuality does arise, at least you'll be armed with some practical information.

Without a specific diagnosis, all of this is hypothetical, but it might make you less anxious.
posted by smirkette at 8:39 AM on December 29, 2011


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