What topics do you consider the most important?

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If you had the opportunity to sit down today and talk to a person that worked professionally for a support organization what would be the questions you would want answered first?

SSI/Waiver information?
Who to contact?
What local resources are at my disposal?

Things like that.

All the above sounds good.

I would also like to know why there aren't more resources to recently DXed adults who are struggeling with employment issues. These things are offered to recovering addicts and MI patients. After receiving my DX...which I only bothered with because of employment issues, I was told there was no such resource to help with specific AS issues of employment...and there are a lot of them. I want to be self supporting but would like to do so with less anxiety,depression,stress.

I would also like more transportation options. I'm limited to the kind of jobs I can access because of driving "issues". I also know that because of cognitive issues of my BF's MS...he was appointed a social worker to help him with some budgeting and orginizing defecencies. He is better at both then I am but I have no such resource...why? He doesn't even use this resource and we desperately need it...this place looks like a train ran through it and it drives me nuts but I can't orginize my way out of a paper bag. I have learned a lot of living skills by trial and error(lots of error),but I would like to be able to borrow someone's "normal" brain a few hours a week to do the tasks that I can understand "intellectually" but not preform myself.


It would also be great if more of the social service,teachers,medical professionals were more informed about AS issues...so I don't have to do it, (and half the time be dissmissed as a "crazy" person.)Hey, I should not have to educate people who chose to work in the social service profession, take a little inititive folks-learning is "fun"

Those are some really great topics, and the reason that I'm asking is that I currently work for a service organization in Pennsylvania that has in my opinion some of the most knowledgable people in the field, and we're currently trying to gather information on what topics people are interested in the most, not the normal line item topics that most organizations tend to cover, but the real questions that people have every day, those things that affect you in the now and not the future.

So by asking you we're hoping to get a feel for just those types of issues and hopefully put some free learning discussions together where people can ask the "expert" or a person that has worked with the system for many years just these types of questions. I hope that makes sense?

Thanks again for your input!

All of the above and contact info for the public school system and if there is an "expert" that can explain the district's protocol for transferring or registering an autistic child in school.

Thanks for asking

Gosh,asking autistics what they need?What a refreshing concept.

Since we are all different in where we land on the spectrum and what strengths and deficits we have...it would be helpful to have some testing for this available. That was what I was hoping when I went in for a DX. It is very hard for me to objectively tell someone what those are(strengths and weeknesses)because I have been living with them my whole life and have little to compare them to, like asking a partially blind person "how blind" they are. I know this is another service that was provided for my MS boyfriend...he is genious in some areas and about 3yo in other areas.(actually he appears more AS then I do in some ways,which is why I'm convinced this is a "brain difference" and not a chemical or phsychilogical one.(Then again, his AS maybe hidden in his MS DX...?)

Anywhooo,I appriciate your asking and will go recruit some other WP input.

Kimj:

From what I understand is that each school district can establish it's own protocol on the tranferring of students, I do not believe this is a federally mandated regulation for the schools. If not directly contacting that school, one of the best places to look for information is at the county level. In PA, from ages 1-3 you are entitled to EI services (PT,OT,ST etc) and I believe that is a federal entitlement (but don't quote me on that most of my experience is with the rules etc of eastern PA) once a person reaches the age of 3 responsibility is handed to the school district, and this is where it gets messy, there are no standards right now from state to state how servies are rendered and each school district or IU pretty much has their own say in it. It is a pretty complicated issue and just the little that I know about it makes me want to walk away or at least poke it from a distance with a sharp stick.

JC

When your done "fixen" the program in PA...how do you feel about really long cold winters...we sure need your help in Minnesota.The best option for an aspie here is to become an alcoholic .Wish I had waited to get sober until AFTER they added AS to the DSM

The first thing I would ask is what are their beliefs.

Beliefs as in religious beliefs? Belief in the system? or beliefs about the symptoms and possible causes of Autism? Or belief in what therapy or course of action would best benefit you?

What financial reimbursement and/or free services etc exist for those on whom others are directly dependent in day to day life?

How does the state express recognition of its enormous dependence on carers looking after people, ( children, and/or those with autism for example ), at home? How does the state support/maintain this vital work?

How do the providers of this essential service in society access this "support"/reimbursement?

If this recompense is currently inadequate are there any moves afoot to extend recognition of this role either financially or in free services?

i would like a list of resources that are available and a breif explaination of what specifically it deals with.
also possibly a list of support resources too. like local support groups or stuff like that.

If I could just not work 40 hours a week, I would improve 100%!
this day in and day out slaving away. . .I mean all I do is work and go home and sleep and get up and eat and work again. and the weekends is laundry and grocery shopping and the schelpping home. . .
who has energy for anything more, and it is just this until I am too old to work with poverty afterwards?

is that a life? I mean is that all there is, really, to the grave?

so, if they can help with this, that would be nice.

Merle

Mom2bax:

Your county should have a list of all the resources that they cover with federal money, or at least they should any support organization that isn't private pay is usually handled on the county level so that might be a good place to look if you are trying to find what is avaliable in your area. Also check with your states department of public welfare, where I am they oversee all the support organizations, budget and set rates for fedrally supported programs. The only downside is that alot of states have not implemented programs yet for Autism/Aspergers/PDD, it was just this year that PA actually setup Autism waiver funding for state run supports programs, so again depending on where you are they may not have much in place yet.