changing the supports system

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I have been employed at a "community based" service provider (a local ARC affiliate) for about 10 years. I have long been frustrated at the level of ignorance to the needs of people on the spectrum within these services. (ok i blew off my plans to go to grad school because I felt morally compelled to stay since I was the only one making any noise about this, or doing anything about it). As an example the notion that most people on the spectrum do not like unpredictable routines, loud chaotic environments, people coming and going, ect Is completely ignored/denied by my employer. (Oddly enough by taking my 1:1 out of that environment and bringing him into a consistent predictable environment with very little in the way of chaos, reduced most of his "problem behaviors" in a significant mannor.

My point is that there is far too few organization providing support services to the AS/Autism community that are run and staffed by people with AS/autism.
Now as a comparison you are not considered credible in the field of drug and alcohol rehab if you have not delt with the problems it had created in your life, so you understand where this other person is coming from.
This should be the same model for AS/ASD supports. People who have experienced what it is like just plane understand better. I know what makes me really uncomfortable, most of these are things that my NT peers would never even think of when trying to figure out what might be causing someone to become upset.
This is also probably our best route with regard to influencing approaches used and policy at the state and federal level that funds those services.

Absolutely.

I am in the final stages of beginning one with a consultant who will become director of a day employment and community inclusion program. IT is exciting that finally their will be a program and it will be properly formulated for people with autism. Others are very limited, boring to me and there is no hope outside of it's doors because they focus on creating dependency on the services for employment and what is offered is very limiting and not stimulating to everyone whilst stuck at minimum wages.

You should goto grad school. My focus is on facilitated employment opportunities and sponsored transitional inclusion in understanding circumstances. The directors will be day to day opporations. I just do the marketing and R & D.

I think a lot of lawmakers are looking for ways to cut medicaid and social dependency right now because there is no money. Approaching those that are actively speaking out about this would be beneficial and you may find resources for funding that way. And the fact that AS has a higher rate of unemployment than Tourette's is a huge loss in potential for humanity in general.

What you got to be careful of is here in the Uk we got community care in the 80's , and some of it was good, but some of the time you ended up with a lot of homelessness, and guys sitting around on park benches.

I'm sorry but to repeat myself at the risk of being boring ,you really have to look at . check what the real motivations are behind any policy before agreeing to it.

Myself included here- you put a bunch of AS guys like us, in front of a bunch of NT guys who want invest money, I assure they will tell you they are going to do ABC and they are going to support you to do ABC-because its so good for AS people, and theyse money guys just discovered it like a revelation, but what you have to watch all the time is they will be wanting to do $DEF. That's the nature of this.

Just be careful out there. I saw a lot of ex-patients, completely bewildered walking around on medication and no shoes, and owners, ie investors in, private care homes and projects satrted driving around Bentleys when the UK community care system came in.

Meme-

Perhaps what I'm talking about is different then that. However I believe community inclusion and employment should be protected. I view what I do as a way of potentially by means of funding advancements with products as a way to protect community integration for myself and others. That should the system go away the candles and other products would pay for some of what is needed to continue advancing opportunity like paying for the rent and a skeleton support employee crew where others with disabilities can convene. What you guys are talking about seems more like day treatment which can be similar.

Ci. I see from your location that u do infact live in paradise. What do the job prospects look like out there? (my parents are from the bay area, infact all extended family is still on the west coast, i am compelled to go to the beach , even in winter, and i grow cactus(who's parents were from mountain view) in my frontyard. Should i mention i have debated both Ucsd and ucsb as grad school options. ( do u know anything about grad prog ib the area?). ( i use parenthises way too much dont i )

This wasn't "day treatment" this was a mind shift in the way our country approached mental illness and disabilty. I won't get into
the relative rights and wrongs of the politics and economic theory this was tied into to, there's good and bad in every political sytem ually the same ratio , but expressed in different places.

Two key things happened:

1. A broad base of ideas were drawn together around the fundemental principle that wherever possible patients should be
released from "asylums" ( places of sanctury) and supported in the community. Now this was helped by the development of new
pharamceuticals and treatment plans - I was there at the moment this all kicked off - for example there were patches which released anti schizophrenic drugs - and a whole team of communtiy psychiatric doctors, social workers and nurses became geared up for the community care programme. The less severve cases were cared for by private companies who jumped on the bandwagon, somehow you got the no shoes and Bentleys out of this suppsoedly caring system.

2. That mindshift happened quickly. We moved from a clinical hospital based model of care where the whole thing was about delivering care and the guys who did the most indelivering the care, taking the most responsibilty, like consultants got rewarded and everybody more or less agreed to the heirarchy thta was there. what everyone agreed on was they were there primarily for the patients. What you got now twenty something years on is a whole new bunch of guys with their noses in the trough who have a great deal of influence and to me screw the system, and are not primarily interested in patient care.

Let me give you an example . Simple one . Back then hospital car parks were free . They were usually tatty half tarmaced bit of ground but no one had to pay to park . Today hospitals have wonderful carparks - perfect tarmac ( the contractors made a fortune, this nice pay machinses and are patroled by private security firms who charge £125.00 to release a car thats not paid to park. Some hospital manager is now in charge of car parks and he parks his expensive high staus car in his own free impoertant person carparking space.

Get a child to casualty with its head ripped open ( done this) you dump the kid at A&E and then heave to find somewhere to park , get a ticket, put it on your car, and then go back out again to put another ticket on your car because you didn't know how long you were going to be there an dbecause it was an emergency you only came out with the cash in your jeans is about to be clamped. But it doesn't end there.

Familes caring for children or parents may have a serious stess put on them and maybe down to one income ( been here) . To vist terminally ill parents in hospitall cost on average £6.50 a night -approx £45.00 per week- that's your kids food money when they are teenagers. Families with multiple patients and needs in the family are forced to hand this over so some dude can be a car park manager - do you see the difference? These guys don't give a cr*p about the needs of patients or service users , we think ABC- they think £DEF and once they get the power they link up with other £DEF thinkers.

Now imagine £DEF thinkers running an actual care system, which is what they do, and I have seen Bentleys parked in private care car parks where the residents were wearing no shoes and dressed in rags and living in the bare minimum of what the legislation required.

Sorry, memoryslip- injecections with drucgs in slow release compounds 14-28 days - not patches - they came later
Meme

If it's any good to you there's about twenty years worth of evaluted reaserch into community care, advocacy and about everything else in here, and it's looking back over this period of transition . I'd forgotten this stuff.

http://www.ccinform.co.uk/Articles/2001 ... ators.html

Four£ 50 is small compaired to the 1500-3000$ a day us facilities charge. Once again with no consideration of the outcones they generate.

Privatisation of social services has deproffesionalused the field. Services cost less on a piece rate basis but cist far more than properly administered supports ever would. Why be cause the goal is maintainjng q xash flow that is based on njmbers not on what u can do for the faces behind those numbers.

This is what I'm saying : If you are going to develop a system, something like community care that focuses on strategies of inclusion and particpation in the community then you have to be wary. The professionals are going to be trying to deliver that system will be concentrating on how to do that. Then you got a whole 'grey area' of these other guys-everything from drug companies, construction firms, computer companies, private investors who will form a loosely linked group and its a necessary set of economic and social relations in this system. -It's like symbosis, but got to never forget is it becomes a game , one example is how they will interpert legislation . You will be thinking how can I use this to help service users. The other group will be working out how to push what they are doing right up to the boundaries of of what they can get away with without getting hauled into court. The most weird thing is observing how they manage to interpret legislation and make what they are doing seem normal and reasonable once they have established how far they can push the boundary.

That being said servces do get delivered. However when financial cuts come , here in the UK the first things that get cut seem to be funding to projects helping people with less severe problems and the guys who saw this primarily as a way of getting the high status car and home are doing something else to hold onto them.

Something I was trying to convey to Ci is grants and funding concerning social inclusion usually have an odd nature. To some degree they are about helping people with problems, they have a humanitarian element. There's a strong parallel element that they are a response to a perceived social threat. NT's don't like seeing groups of disturbed people on the streets or being hassled by them. It interrupts their shopping and profits drop for the stores where they congregate. The stores get onto the council for them to do something and they hualed off by the police and get a hostel built in some cheap end of the city.

NT's are frightened of people with social differences. I'm not condoning this ,but they are currently cr*pping themselves that some alienated AS's at the top of the bell curve are going to do things that will seriously impact on their lives because they will figure out something and because these guys have been excluded and are angry they will use it in a negative way. This is stating a probability and not a deception . You need to use this fear as leverage in negotiation because it's the other reason they arebothering to consider giving you funding for the projects.

Meme

I talk to the bosses of the contractors receiving government dollars all the time and they have been aware of my project for some 5 years. They are on board with the new Humboldt Includes campaign that is to network government vendors for inclusion. They are not frightening but profit mongers are because a system based upon non-innovative standards and practices looks out for its own profitability and not the better future for people with disabilities such as facilitated employment. What I'm doing could have been done as a special industry and marketing like-so some 40 years ago. I intend to make up for lost time and I am a strong, confident and effective voice that people listen to.

Frightening profit mongers - that is a great phrase. Mind if I use that some time in a piece of writing?.

I seen some bad things done out of ignorance. There was a group of kids, great kids, low functiong, Downs in a small town . They started producing stuff like bits of good craft local people wanted to buy.

A town councilor didn't clock me a AS, he was on walkabout, and he started laying on his prejudice to me how these kids being in the public space selling their stuff from tables upset the locals and some shopkeepers. It didn't really upset many of the locals , it just didn't suit his image of the town. This guy tried to throw the disablity agency out of the public space and was only stopped by a bunch of NT's and me going ape in the media about it.

But this guy was so sneaky because of the method he used. I watched as he stood taliking to the disabilty organisers/parents all friendly and chatty and nice, saying what a wondeful job they were doing, and then he calmly walked off and called some other guys in the council and began trying to get them banned.

I'd just say be wise in you dealings with these peopel , because I swear there's no way if I hadn't heard what his intentions were, I'd have figured out what this guy was about.

Meme

I can recall the former (now retired, and continuing to syphon 50k a year out of the organization) executive director personally telling me to take the 30 some year old man with LFA that was my 1:1 out of the building for the day because a family was coming to check the place out for their son or daughter. Like some how his behavior was so wrong as to jinx the deal. (mind you they would let him express himself, ie tantrum to the point of self injury (blinded in 1 eye) and say how we love you just the way you are the rest of the time.

The notion that there might have been a reason behind his actions never occured to them, oddly enough when I have addressed it that way, he calms down before the tantrum starts b/c I make an effort to pay attention to his wants and needs in the first place.

mind you the majority of staff and management seem to persieve supports as being babysitting not teaching and learning along with the individual so that they can have the best quality of life possible, even though this is written in the state law

Memesplice I'd never hire on my PR team.

Unfortunately, there is some truth to this and I think there also can be other reasons organizations don't take an approach that fosters growth. For example, I recently heard that the CFO of a social services provider in my state was denying nearly all requests from clients to have appropriate HMAT (home modifications and assistive technology) installed in their homes via a state-funded program. Her rationale? If the technology helped them become more independent, they would need fewer direct care hours from her company. Some companies that are in the business of providing direct support staff want to keep their 'customers' dependent on direct support staff. In an economic climate where state and federal funding is drying up, social services has become a business just like any other, while companies struggle to stay afloat. It's sad, but true.