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Storygirl

If independence as an adult is Plan A, what is Plan B?

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I think about this. What if DS is not able to support himself fully as an adult? How do we plan for that possibility?

 

What do you think about for your kids? What are your contingency plans? What should we be thinking about?

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In our case, DS has NVLD. The statistics for people with NVLD being able to successfully hold down a job long term are depressing. Maybe worse than with high functioning autism, because NVLD comes with visual spatial and math disabilities that most likely rule out the stereotypical tech and STEM jobs that some people with ASD are able to succeed at.

 

The same issues would make learning a traditional trade difficult. Jobs that require working with the public (customer service, retail, etc.) are likely not going to work. He has a particular problem doing anything that requires group interaction. He makes eye contact but has has poor pragmatics, ADHD, and a low average IQ. He has math and reading comprehension SLD and dysgraphia. His processing speed is in the first percentile. I think he will manage only basic or remedial high school academics and no college unless it is CC specific to some kind of job training.

 

I admit I'm worried. If you met him, you might not think his future outlook is so concerning, because he can come across as NT. But he has some major hurdles ahead of him.

 

And yes, he gets social skills therapy with a SLP, for two full class periods per week at school (one privately, one in a small group with a peer). But he hates it. And it will be a challenge for him to truly GAIN those skills and be able to apply them across the board, and not just DEMONSTRATE them in the structured class. Because he hates practicing the skills and doesn't want to be in the class, it is a bigger challenge.

 

I don't want this thread to turn into ideas about how to help my son (though if you have some, great!). I'm hoping that we can share what we think we will do to help launch our kids, and what we can do if they can't fully provide for themselves as adults. Because I'm in a position where I just don't know how DS is going to get to that point. And he is hard to live with, so we need a plan other than "live with parents forever."

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Right now I have two kinds of thoughts:

 

1) He needs to be ready to work upon high school graduation, so maybe vocational school. Figuring out what to study is going to be a challenge.

 

2) I despise moving and would like to never do it again. But I have a dream house in my mind, which has an attached apartment. So that if he can't support himself well enough to pay for his own housing, he can live with us but still live separately. We have elderly family members who could also benefit from that set up in the meantime. And I have another child whose career aspirations may provide a small income, so he may not be the only one of my kids who could possibly use that kind of space. It would be nice to have.

 

Would you have an adult child live with you indefinitely? Would you want a private space for them? Would you pay for them to have their own apartment? What will you do if your kid can't hold down a job and have a sustainable salary?

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I'm not in a similar position, but if I had the money I would love to have a home with an attached apartment anyway.  It could be used to generate some income if not needed for family members.  My concern would be for the long term.  What would happen to your son if you and your husband were not able to continue looking after him.  Are you his legal guardians now?  Would you be able to identify family or friends who would be willing to act as his guardians if you couldn't.  Does your son have a therapist or social worker who could help you think through some of the issues?  This has to be a painful situation for you.  I hope you find solutions.

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Guardianship and POA are a whole ball of wax that would be things to consider. 

 

Do you have any kind of meetings near you about transition to adulthood? Even if he does not currently qualify for services, you can go to those meetings. Often the county board of DD has them.

 

There are kinds of disability that are based on not being able to work well with others, etc. I can't remember what the qualification is, but there are forms out there that I stumbled onto online.

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My DS21 was diagnosed with NVLD, inattentive ADD, and is epileptic. I'm sure that there were more diagnoses that could have been made, but I didn't follow it further. He *squeaked* out of high school with only basic classes and crappy - but passing - grades. It took two entire years of poking/prodding/helping/pushing/begging/demanding/fighting to get him into a part-time job at the local grocery store, which has morphed into a nearly-full time job since graduation. He literally sat in my husband's car and wept before an interview at McDonald's because he just didn't want to be interviewed. It's been 2.5 years now, and it was really the best thing for him. This was the kid who was the MOST TARDY senior in his HS class; he now arranges to get himself to work on time every single day. And in a shirt and tie, too! He has moved, though very slowly, from being a bag boy to fetching carriages to learning to empty/service the can & bottle machines to now being a cashier. I know it sounds like not much, but it is a huge thing for him, being such a natural introvert and now having to interact with people all day long. It's been great for him. He's definitely not earning enough to support himself in an apartment alone, but we are hoping that he will get together with buddies to rent an apartment together in the near future. He has a date that we have all agreed to is when he needs to be 'out on his own', and a list of all the things that he needs to do (save money, get transportation, get his driver's license, etc) before that date. He WILL launch, eventually, it will just take a bit more time and effort on our part to get him there.

 

Things that were great for him in high school - things that really brought out strengths we didn't know he had - were JROTC, marching band, and taking an ASL course as his foreign language (through the local CC). There was no way he was going to pass a written foreign language, and ASL really seemed to come to him naturally.

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My DD absolutely loves babies and small children so assuming that she could get through enough ECE units, I could see her working at a daycare/preschool. There's so much turnover in that industry that I think someone who would be loyal to an employer would be pretty attractive. Wages are unfortunately low so we'd need to figure out some sort of subsidized living arrangement.

 

I could totally see her living in one of those communal farms & loving it.

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It's hard for me to think of him needing legal guardianship. I think he is more likely to be what I would consider under employed, rather than unemployable. For example, he is not the kind of person you would expect to need to live in a group home. If he were unemployed as an adult, I think people would think of him as a slacker, not as someone who is disabled (I'm talking about the perception others might have, based on his personality, not what my own thoughts are; I myself can see the disability). This is often called the "illusion of competence" with NVLD, where the individual seems more capable than they actually are.

 

I kind of picture him living with us until he is twenty something but eventually being able to move out. Kind of a delayed adolescence. I haven't thought much about what he will be like in his thirties and beyond and what kind of help he will need then.

 

But I feel like I should. I don't want to be blindsided by having my own "illusion of competence" regarding his future. NVLD tends to grow into a bigger, not a smaller, problem as kids get older, so I want to be realistic about my expectations. I don't want to assume that as he gets older, he will mature in ways that he might not.

 

What will happen after we are no longer able to be a support to him is a good question. Whether or not we need guardianship, I don't know. I need to look into it. I'm not sure he would even qualify for that kind of legal oversight.

Edited by Storygirl
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About transition services... it's something I've been wondering about. He's in sixth grade now, and we are happy with his placement at his school, but it only goes through junior high. I want to investigate all the local high schools to find out what might be the best place for him to be, so that he can be prepared to work after graduation. If we ever do move, I want to make sure we are in the best school district for him. I've been doing some online digging and see some transition services mentioned by some school districts. I should check with the county, too. I haven't looked at what they provide yet.

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My cousin has many issues that prevent her from living completely independently.  She never will.  But living with her parents was horribly frustrating for her and for her parents, much as they love her.  They eventually found a wonderful group home.  The group home has helped her hone life skills, found her a job she can work part time that actually touches on her limited strengths, she has friends, her life is structured enough for her to function pretty independently, and she still sees her parents and her siblings often without all of them living on top of one another.

 

I also have a friend who is schizophrenic.  He can no longer function completely independently.  He lived with his parents for years but it was an incredibly strain on all of them.  He wanted independence and so did they.  He found a group home and has done well there.  He has a part time job, friends, structure and people to monitor his medications and health needs while still feeling like he is an adult and has some independence.  His parents finally had time to take care of their own health needs but can still see him.

 

I think an apartment on your property might be a great (and a cheaper) option than something like a group home but you might also look into group homes in your area and see if any would fit your son's specific situation if it turns out you need something like that.  Quality can very tremendously.  Some are awesome.  Some can be a house of horrors.  Definitely do your research.

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Noreen, thanks for sharing your story. It's the image I have in my head of what DS's future could look like. Although perhaps he might work in some kind of package distribution center or warehouse or something, where he didn't need customer service skills. Sigh. It's hard to picture him doing even that, when we still have to make sure he brushes his teeth at age 12, so I get discouraged.

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My oldest has NVLD, ADHD, etc.  He is now 21 and doing well but not able to fully support himself.  He can't afford an apartment on his own and hasn't been able to find someone to move out with.  We are struggling with this as he wants to be independent and living on his own but with his salary it is difficult and rents here are very, very high.  He does finally have a full time job that pays okay so that is definite progress.  We figure he will always struggle and are trying to figure out what we're going to do.  I wish I could afford to buy a condo or small inexpensive home and have him pay rent but not financially able to pull that off.  We have friends who have a son with similar issues and that is what they ended up doing.  Bought a condo, son pays rent he can afford and they absorb the balance.   

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Splash, thank you for sharing. I need to hear stories like yours and Noreen's. I think everyone needs to hear them. You are describing the kind of challenges that I think may lay ahead for DS and our family. And for many other families with children with ASD and other special needs as well.

 

As parents, we need to think ahead about how to handle this. It's hard, because when our kids are younger, we can only speculate, and we WANT to think the best case scenarios will apply to our own kids. On the LC board, we talk a lot about getting through school and life. I think it might help me to talk more about life AFTER school.

Edited by Storygirl
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What a great thread idea! This is something I've been thinking about a lot.

 

In our case, dd is diagnosed with ASD2, anxiety, depression that seems to come and go, and possibly (probably) a mood disorder. Her IQ tests in the low average range. She struggles with emotional regulation, energy levels that vary from almost manic when she's excited or silly to very lethargic when she's doing a non-preferred task, and generally low motivation for anything outside her preferred interests.

 

She has a special interest which could lead to a field of employment, but I'm not sure she has either the emotional stability to handle the work or the intellectual ability to qualify for more than entry-level work. That entry-level work would probably not be enough to support her.

 

At the moment all I really know is that I don't know enough.

 

She looks much more neurotypical than she actually is. And, I am so accustomed to working with her that I forget how much I am helping her and compensating for her weaknesses.

 

I am certain that I want her established somewhere sustainable outside our home by her mid-twenties. I've watched an adult relative who probably could get some sort of diagnosis flounder after his parents died. He had lived with them almost all his life. I want to help her make that transition while I *can* help her, kwim?

 

I really need to start actively investigating this.

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My DD absolutely loves babies and small children so assuming that she could get through enough ECE units, I could see her working at a daycare/preschool. There's so much turnover in that industry that I think someone who would be loyal to an employer would be pretty attractive. Wages are unfortunately low so we'd need to figure out some sort of subsidized living arrangement.

 

I could totally see her living in one of those communal farms & loving it.

These farms look really good. I could see a situation like that working for dd.

 

Eta: But my gosh, the cost! Upwards of $60,000 per year for one of them, for up to nine years?!?! Ouch.

 

Not that it might go very far, but I wonder if a 529 account could cover something like that.

Edited by Innisfree

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My DD absolutely loves babies and small children so assuming that she could get through enough ECE units, I could see her working at a daycare/preschool. There's so much turnover in that industry that I think someone who would be loyal to an employer would be pretty attractive. Wages are unfortunately low so we'd need to figure out some sort of subsidized living arrangement.

 

I could totally see her living in one of those communal farms & loving it.

I've said this before, but when the time comes, look into the CDA-it's a competency based credential focused on the actual day to day work and can often be much more achievable for persons with special needs who are good with children than an ECED program, which typically has the same liberal arts core and teacher certification requirements as any other teaching degree. A CDA also still counts for highly qualified status as a school district paraprofessional, which can be a higher paying job (and usually comes with benefits, while child care often doesn't). Edited by dmmetler

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DS17 (almost 18) was recently diagnosed with ASD-1 and NVLD. He's also 2e.

 

Perhaps I'm being naive or overly optimistic, but at this point I can't imagine that he won't be able to hold down a job that pays enough to fully support himself. But I could also see him not wanting to move out simply due to the familiarity of living here/the not liking change issue that comes with ASD.

 

I understand the profile of NVLD says the deficits become more of a struggle to deal with/compensate for as a child gets older, but that isn't what we've seen. DS definitely struggled some during his early/mid teen years, but I'm not convinced it wasn't mostly the normal struggles of that age worsened a bit by the anxiety that comes with his diagnoses. Once he was properly medicated for anxiety his ability to function adequately improved. He got his learner's permit and drivers license right on time (16). He's an excellent driver. We've worked on teaching him the same skills we did his NT older brother (getting himself up and to/from school, going to appointments on his own, scheduling follow up appointments, advocating for himself when necessary, making his own purchases, etc.). He's also perfectly capable of taking care of many things around the house (the pets, etc.) when we're gone. In short, I suspect he's about as capable as an average about-to-turn-18 yo. We've seen him blossom in many ways in the past three or four years.

 

I fully accept that he may end up under employed. But he's 2e. I suppose technically based on his giftedness he would probably be considered under employed in a LOT of good, well paying jobs.

 

As far as him continuing to live at home -- DH and I wouldn't have a problem with that at all. In many ways it would be beneficial for us as we age to have him around. Plus he's very easy to live with -- no issues at all with anger management or anything like that, very willing to do whatever he's asked, etc. And in our extended family it's not unusual for adult children to live at home for at least awhile (we have 26 and 27 yo NT nephews (not brothers) still happily living at home with their parents for sound reasons). If DS does end up staying with us we'll educate him on all the aspects of home ownership (maintenance, bill paying, etc.) so that when we're no longer capable or no longer around he'll have the knowledge and experience to handle things on his own.

Edited by Pawz4me
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Thank you for starting this thread. My ds15 has Down syndrome and I wonder what his future will look like. He still seems so immature that I cannot picture him living independently some day, though I know many people with DS do. He says he wants to be a farmer so those farms/ranches that Crimson Wife linked look like they would be a great fit for him if they were affordable.

 

Dd17 has said ds can live with her when she is independent, if necessary. My youngest brother has also agreed to be a support system for ds when dh and I are gone.

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These farms look really good. I could see a situation like that working for dd.

 

Eta: But my gosh, the cost! Upwards of $60,000 per year for one of them, for up to nine years?!?! Ouch.

 

Not that it might go very far, but I wonder if a 529 account could cover something like that.

 

I think they're designed for individuals whose disabilities would qualify them for government support. My DD with having both the physical and developmental disabilities most likely will continue to qualify for support after she turns 22. I haven't looked into the qualification criteria because we're nowhere near transition planning.

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I think they're designed for individuals whose disabilities would qualify them for government support. My DD with having both the physical and developmental disabilities most likely will continue to qualify for support after she turns 22. I haven't looked into the qualification criteria because we're nowhere near transition planning.

 

Yes, government support does become the next question, doesn't it?

 

One thing I haven't gotten around to exploring, but should, is whether a kid can be "classified" as disabled by the Social Security administration without needing to qualify for financial assistance *right now*. I know that our present income means that she can't get any financial support, Medicaid coverage, etc. But I need to see if she can get "labeled" as disabled in order to make the process of qualifying for help easier when she is an adult. The doctor who diagnosed her said she thought the disability was significant enough to warrant that, but the Social Security people I spoke with on the phone were discouraging. That may be their job, lol. I need to go through the in-person appointment, cumbersome as it is, to find out more, I think.

 

Has anyone else done this?

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Noreen, thanks for sharing your story. It's the image I have in my head of what DS's future could look like. Although perhaps he might work in some kind of package distribution center or warehouse or something, where he didn't need customer service skills. Sigh. It's hard to picture him doing even that, when we still have to make sure he brushes his teeth at age 12, so I get discouraged.

 

I only stopped having to ask about brushing teeth and reminding to take his epilepsy meds in the last year. (He turned 21 a few days ago!) I do still have to mention washing his work shirts and wearing deodorant, but less and less...

 

I worked in a refrigerated grocery distribution center for years in my early 20s (late '90s-early '00s). Looking back now, there were LOTS of grown men there that had all sorts of learning disabilities and were possibly on the spectrum (from mild to profound issues). They all were very good at their jobs; the jobs paid well and included excellent benefits (yeah, unions!). That's not a bad plan to have!

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I only have a sec and didn't read the other responses, but here is our reality. Our 24 yr ds is only semi-independent. He lives in an apt by himself and works full-time at Goodwill. He lives in a village type town, so he can walk to work and any store/place he needs or wants. We pay all of his bills and buy all of his groceries for him. We take him shopping for things like clothes and shoes. If he needs to go to the dr, we take him, etc.

 

He can manage going to and from work and day to day routine, but he would be overwhelmed if he had to manage his budget (which is very limited bc he only makes slightly more than minimum wage). He will only cook non-raw meat. He does his laundry at our house. He calls me (no exaggeration) at least 15 times a day.

 

I tried to convince him to go to the library today bc he had the day off and I couldn't pick him up to come over here. He was too scared to go to the library by himself. (His anxiety cripples him. He will go into the grocery store on the Dollar Tree, but not the library. No logic,to his decisions. He just has reactions.)

 

This quasi-independence is working for us. We have the advantage of being a very large family and his siblings are all willing to keep helping him when we are no longer able to.

 

(ETA: My son also has a very high IQ. But for him, his inability to cope with juggling multiple adult responsibilities simultaneously and his anxiety both mean he is severely underemployed.)

Edited by 8FillTheHeart
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 One thing I haven't gotten around to exploring, but should, is whether a kid can be "classified" as disabled by the Social Security administration without needing to qualify for financial assistance *right now*. I know that our present income means that she can't get any financial support, Medicaid coverage, etc. But I need to see if she can get "labeled" as disabled in order to make the process of qualifying for help easier when she is an adult. The doctor who diagnosed her said she thought the disability was significant enough to warrant that, but the Social Security people I spoke with on the phone were discouraging. That may be their job, lol. I need to go through the in-person appointment, cumbersome as it is, to find out more, I think.

 

Has anyone else done this?

 

Yes, a child can be deemed "disabled" by SSA without qualifying for monthly financial support. I started the online paperwork one time but didn't have all her paper trail handy so my session timed out. When I went to log back in, their system was down :glare: As it turns out, my DH landed a new permanent position shortly after that so I never bothered to finish applying. It's on my "to do" list since my parents want to open an ABLE account for DD and we need to have her deemed "disabled" by SSA before they can do that.

 

Be forewarned that if your child has an extensive paper trail the SSA application is very tedious.

 

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Yes, a child can be deemed "disabled" by SSA without qualifying for monthly financial support. I started the online paperwork one time but didn't have all her paper trail handy so my session timed out. When I went to log back in, their system was down :glare: As it turns out, my DH landed a new permanent position shortly after that so I never bothered to finish applying. It's on my "to do" list since my parents want to open an ABLE account for DD and we need to have her deemed "disabled" by SSA before they can do that.

 

Be forewarned that if your child has an extensive paper trail the SSA application is very tedious.

 

 

To piggyback on this...there are also state-based things that come into play too. In our state, you apply at the county level.

 

The programs here are called waiver programs, and there are different types of waivers for different things. There is a waiting list, so you want to qualify your child as early as possible so that by the time they need to transition, the means are there. Some waivers pay for services, some pay for apartments and set you up with roommates. Some are multiple thousands of dollars for things like the farms or skilled nursing, group homes, etc. Some are priced to reflect that the individual lives at home. It's kind of tiered system, and I think it someone works with disability/SSN and with county stuff, but I get mixed up. Our kids aren't likely to qualify for anything, at least at this point. 

 

Depending on the state and county, your children may qualify for job training programs, sheltered workshop programs, etc. When we were visiting my parents, we toured a chocolate store that is run by the local disability agency. Our tour guide was a young adult with Down Syndrome who clearly loved his job and was an excellent tour guide. He introduced us to the various SN adults that worked there and their supervisors. It was awesome. Other jobs the county offers (and I don't know them all) are things like janitorial work on a crew with other SN individuals and supervisors who do job coaching. One man that goes to the church I grew up in lives in nearby subsidized housing (mostly with older folks), and he rides his bike to work. I think he does janitorial work, but I'm not sure. I think he does a little bit of cooking on his own, but he can ride all over town (small, walkable town), and he can access everything he needs on foot or by bike. 

 

In our state, it's important to bring all the evaluations you have. They typically want to see two areas of disability/adaptive living issues. They use a state-developed test. It's important to give some perspective on the answers your child gives. For instance, your child might answer that they can shower, but if they need to be told to shower, reminded to use soap, etc., all of that is factored in. If your child can't handle money safely or order and manage their own meds, those are qualifying things. I think the scale moves around based on age too, so their is a child version and then a teen/adult version of the qualifying test.

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We are actually currently looking to move into town from the country & trying to find a place with an attached "inlaw" apartment or a duplex to buy for this reason.

Found one this week, but it sold in like a day :(

 

My dd doesnt currently qualify for any state run job training or assistance programs, but we'll try again during high school.

 

She's highly likely to go into child care or another caring field, but its so low paying & she doesnt have the skills for a degree, or a high school diploma or GED (our state doesn't recognize homeschool diplomas for certificate programs). One possibility is us running a preschool or daycare together (I have the experience & teaching degree), but we may not want to work together either.

 

Our public school should be talking about "transition planning" at all future IEP mtgs.

We want her to do their half day vo tech program when shes old enough.

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