The Young Adult Transition Project

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DW_a_mom
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11 Jun 2009, 2:00 pm

A recent thread had a few of us thinking that one thing "we" might be able to accomplish is adding some flexibility to the funding and support options available once a child reaches young adulthood. Many of our smart kids can and will become self-supporting and contributing members of society, but not always by the ages social services has set. AS develop on their own, unique, timeline, but social services isn't structured to recognize that. Reach a certain age, and the services change from education to maintenance. Most of us here will agree that is a mistake, I believe. Continue the support and education for longer, and the maintenance may never be needed. Long run, a win-win for the AS and for society. An easy sell, if we can educate the right people.

So this sticky is for us to develop an argument and discuss who to present it to, and how. Maybe this one little thread can motivate a small change that will actually help AS young adults. We can try, anyway, right?

It may also be helpful to link to the some of threads where some of these issues have been discussed, so feel free to do so.

Thank you in advance for your input!


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Last edited by DW_a_mom on 17 Jul 2009, 11:52 am, edited 1 time in total.

0_equals_true
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12 Jun 2009, 1:12 pm

Can you explain a bit more how you intend to help? Right now there a basically no adult services beyond diagnosis specifically for ASD an precious few for teenagers.

As with anything it ultimately comes down to money, no point sugar coating it.

I don't really know what constitutes contributing to society these days. I help the ASD community though NAS and through my own efforts (work in progress). However I if far to say I have not got off the launch pad. I don't really know if you could say I haven't met my potential because it really difficult to know what my potential is in my case.

I slipped thought he net from age 2 until 25. Services with real impetuous and funding end at 16. That is basically because most paediatric services end a 16.



DW_a_mom
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13 Jun 2009, 6:51 pm

One mother was posting that she could get money for an aid to accompany her young adult child on a social outing, but not money for an aid at college. The thinking was that to the extent there already is money available, its use should be flexible to meet the individual needs of the unique young adult. In which case, The "project" in this thread is to get social services and other agencies well informed enough to be able to apply existing funding more broadly and more wisely. Its going vary by area if there is ANY existing funding to discuss, of course.

It will help, too, if young adults post about what they see as their needs. Not so much about reaching your own potential, as being able to stand on your own two feet (pay for your own living needs without government or parental assistance) and be relatively happy about it. Unfortunately, society cares a lot less about potential than not having to support someone, so the most effective arguments are ones that lead to future tax paying citizens who earn money instead of asking for it. If 5 years of extended support through college or a transition period leads to 20 years making a good salary and paying taxes, society considers it a solid investment. Does that make any sense?

Not all AS can reach that point, but from the stories I've heard here, quite a few more could reach it with the right help than currently do. This "project" is about getting the right help.


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CRD
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16 Jun 2009, 1:36 am

Great idea. Interview skills for a starter, how about how to pay bills/ use a bank. Learning how to do the basic domestice things I.E cooking and cleaning. Planing meals, managing money so your not broken and out of food hafe way threw the month. Staying safe remebering to lock your doors ,windows ect. I know this maybe insulting to some of you guys but these are skills i find my as cousain lacking that have kept an other wise smart guy from moving out form his mothers home or keeping/ getting a job. I'd love to see more of this done. I know most mothers and fathers want their kids to grow-up and be happy and indenpent. This I feel is a shared goal for us all. Please let me know if I'm missing the mark it's late and had far to much coffee.



Fedaykin
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16 Jun 2009, 3:07 am

My personal opinion is that government involvement only messes people up and leads them into disability roles. Social services should stay out of the lives of people so they understand it's their own job learning to take care of themselves. In Sweden, the government spends enormous amounts of money on a support program for autistic people, and judging by the statistics, autistic people here are the least independent out of all countries.

I think autistic people are very vulnerable to nanny'ing - for a person on the spectrum, I think the only thing that works to convince people that it's their own job taking care of themselves is leaving them to do just that. NT people will learn through imitation, AS people won't.

There seems to be such a difference between Americans and Swedes in this regard.. Americans tend to be self-sufficient, while in Sweden, people with AS usually go "oh, I wish they would make jobs that would fit me so that I could work" and "oh, I wish they had spotted this or that problem in me and helped me with that." Government employees can't figure out what a particular person needs, it's up to him or her - my experience is that the frustration in trying to work with government just makes people give up.

I think the greatest problem is that people with AS give up really fast. In Sweden, it would be good if the employment office actually helped people with AS to get into real jobs, but here, people on the spectrum are shoved into disability programs right away. And what reason would the social workers have to not do this when that's how they secure their own jobs? If all autistic people became independent, the social workers would be out of a job.

I bet 98% of the people looking for government to sort out their problems will end up disappointed. Government solving problems works in theory, not in practice. I think non-government support groups and maybe private companies that would specialize in helping with this transition could work on the other hand. I feel it would be the best if we could get government to stay out of this, and instead have the private sector realize it could be profitable for people to reach their potential.



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17 Jun 2009, 4:23 am

CRD wrote:
Great idea. Interview skills for a starter, how about how to pay bills/ use a bank. Learning how to do the basic domestice things I.E cooking and cleaning. Planing meals, managing money so your not broken and out of food hafe way threw the month. Staying safe remebering to lock your doors ,windows ect. I know this maybe insulting to some of you guys but these are skills i find my as cousain lacking that have kept an other wise smart guy from moving out form his mothers home or keeping/ getting a job. I'd love to see more of this done. I know most mothers and fathers want their kids to grow-up and be happy and indenpent. This I feel is a shared goal for us all. Please let me know if I'm missing the mark it's late and had far to much coffee.

I think the point to be made is it depends on the individual. That is what she mean sby flexibility I think.

The problem with that is that auditors would never go for that. They like things to be exact, and know exactly how much it is going to cost, and have very exact and unchanging criteria for prescribing this funding.

Even medical practitioners are confused the way they characterize people, and they know the tertiary panel (or whoever has their money on the purse strings) has a stereotypical view of who they are dealing with, which is why these medical reports can have false or misleading information in them, or leave stuff out.



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17 Jun 2009, 4:33 am

Fedaykin wrote:
I bet 98% of the people looking for government to sort out their problems will end up disappointed. Government solving problems works in theory, not in practice. I think non-government support groups and maybe private companies that would specialize in helping with this transition could work on the other hand. I feel it would be the best if we could get government to stay out of this, and instead have the private sector realize it could be profitable for people to reach their potential.

So far private companies have completely failed to fill this gap (and many others). In reality there is no commercial advantage to them, it is a white elephant and not profitable, supply and demand is irrelevant because of this. Income requires a smaller time frame, this is too open ended and the gain directly to these companies is nothing to minimal. In other words there are much better ways they can make money.

And no I’m not idealising about state services either they have failed too. it would be good if people stop idealising in general.



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17 Jun 2009, 4:59 am

Put it this way I'm a business angel and potential investor. These people want funding and free services, they are not paying you. How are you going to make money?

No one has been able monetise things like this. The only people who are offering things like this are charities, and they fall short of what you can get from the health/social services in many cases.



OregonBecky
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22 Jun 2009, 3:44 pm

This is a good thread. I think parents need to challenge themselves about assumptions they don't realize they have. I'm always learning to rethink.

Another mother of an Aspy young adult called me to say that her son isn't ready for the kinds of activities my son is doing. Her example was, he hasn't even learned to stop leaving dishes all around his computer area so how could he manage anything like taking a class? I replied that my son leaves dishes all around his computer. Then he runs out of cups, looks around his computer and thinks, oops and then my kitchen has a bunch of cups in the sink. Just because my son isn't house broken on the time table that NT's get house broken doesn't mean he's not ready for other things.

He's getting better at picking up the messes he leaves around his computer. What if an NT person had to learn what my son has learned before they could move onto something else? We all learn different things at different rates. Some of us can't ever learn to do something well that seems easy to others but that's not a good reason to prevent them from moving on to where they passions are.


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DW_a_mom
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17 Jul 2009, 11:51 am

I'm going to take the stickie off of here since it doesn't seem to have enough traction. Good discussion; just want to be careful with our stickies.


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24 Jul 2009, 3:36 am

OregonBecky wrote:
This is a good thread. I think parents need to challenge themselves about assumptions they don't realize they have. I'm always learning to rethink.

Another mother of an Aspy young adult called me to say that her son isn't ready for the kinds of activities my son is doing. Her example was, he hasn't even learned to stop leaving dishes all around his computer area so how could he manage anything like taking a class? I replied that my son leaves dishes all around his computer. Then he runs out of cups, looks around his computer and thinks, oops and then my kitchen has a bunch of cups in the sink. Just because my son isn't house broken on the time table that NT's get house broken doesn't mean he's not ready for other things.

He's getting better at picking up the messes he leaves around his computer. What if an NT person had to learn what my son has learned before they could move onto something else? We all learn different things at different rates. Some of us can't ever learn to do something well that seems easy to others but that's not a good reason to prevent them from moving on to where they passions are.



My seventeen year old brother leaves his dishes and garbage by his computer and his room looks like a tornado hit it....Hes NT btw.


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25 Jul 2009, 3:09 pm

Okay, I am from an entirely different part of the world where social services funding is arranged differently to the US, but I can relate to some things the people here have said. IN my country, however, the emphasis is too much on training and too little on maintainance, in my opinion. At least where it comes to daily living supports: you *always* have to be trained, rehabilitated, activated, insert-similar-term-of-the-moment. I am now 23 and in what I hope will be my last "training-oriented" place, the mental institution's resocialization ward. I have before been in blindness rehab services (adults 18+), independent living training home for disabled, including blind and autistic (young adult, 18-30 or so), independent living for a short while, failed at that, psych hospital, and now that institutions'reso place. It was at one poitns uggested I go to another independent livingtraining home specifically for autistics, but I refused because I didn't want to be shown how to do my cleaning, cooking, etc. yet again when I'd been taught and retaught this same thing so many times. From here, I hope to move into supported housing, and I hope this will be more "maintainance-oriented", cause I've really been trained beyound my limits.

But where I can relate is the inflexibility about wha tyou can and can't get help with. I couldn't get an aide for college-related support either, because the funding agency said college isn't "day activities" - "day activities" are going to a sheltered adult daycare center, oh well, not the type of education I'd envisioned for myself. I aslo need help with housekeeping (ie. someone to actually do some cleaning for me), and it's hard to ge this, because my primary disability is said to be Asperger's and that fall sunder the umbrella of psychiatric impairments, for which all your support has to be "activating", "stimulating", "directing", etc. Having two primary disabilities just doesn't work.

Well I'm not sure if this is at all relevant.



OregonBecky
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25 Jul 2009, 5:07 pm

ChangelingGirl wrote:
Okay, I am from an entirely different part of the world where social services funding is arranged differently to the US, but I can relate to some things the people here have said. IN my country, however, the emphasis is too much on training and too little on maintainance, in my opinion. At least where it comes to daily living supports: you *always* have to be trained, rehabilitated, activated, insert-similar-term-of-the-moment. I am now 23 and in what I hope will be my last "training-oriented" place, the mental institution's resocialization ward. I have before been in blindness rehab services (adults 18+), independent living training home for disabled, including blind and autistic (young adult, 18-30 or so), independent living for a short while, failed at that, psych hospital, and now that institutions'reso place. It was at one poitns uggested I go to another independent livingtraining home specifically for autistics, but I refused because I didn't want to be shown how to do my cleaning, cooking, etc. yet again when I'd been taught and retaught this same thing so many times. From here, I hope to move into supported housing, and I hope this will be more "maintainance-oriented", cause I've really been trained beyound my limits.

But where I can relate is the inflexibility about wha tyou can and can't get help with. I couldn't get an aide for college-related support either, because the funding agency said college isn't "day activities" - "day activities" are going to a sheltered adult daycare center, oh well, not the type of education I'd envisioned for myself. I aslo need help with housekeeping (ie. someone to actually do some cleaning for me), and it's hard to ge this, because my primary disability is said to be Asperger's and that fall sunder the umbrella of psychiatric impairments, for which all your support has to be "activating", "stimulating", "directing", etc. Having two primary disabilities just doesn't work.

Well I'm not sure if this is at all relevant.


It's VERY relevant. This makes me mad. What does being good at certain subjects at school have to do with how good you clean your house??! !! What's wrong with everyone? You probably have a brain that is good at a whole lot of stuff but they think you need to be a good maid!
Your post is a good one. Sadly, it applies to too many people.


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DW_a_mom
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25 Jul 2009, 8:14 pm

I agree, I found Changeling Girls post to be very relevant.

My question is, and the reason I originally started this thread:

What can we DO about it?

Can we start an educational letter writing campaign? Collect stories and examples to take to agencies when they are evaluating their programs? Is there anything that we, as an internet group, feel we could accomplish to make some positive progress on changing these policies?


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OregonBecky
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25 Jul 2009, 8:22 pm

DW_a_mom wrote:
I agree, I found Changeling Girls post to be very relevant.

My question is, and the reason I originally started this thread:

What can we DO about it?

Can we start an educational letter writing campaign? Collect stories and examples to take to agencies when they are evaluating their programs? Is there anything that we, as an internet group, feel we could accomplish to make some positive progress on changing these policies?


I was in a group consisting of care givers, ex-offenders, devepmentally disabled adults- just a bunch of people that society would rather not think about. The leader had everyone tell their stories at the first meeiting and then they worked on what common threads they had, condensed them to the most powerful points. Then they gave an amazing presentation that had a powerful effect on the local politicians who could never forget them,

Changling Girl has a powerful story. Maybe we could request more from others who get screwed up transition policies that hurt more than help.


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