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Mountain Goat
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05 Aug 2023, 11:27 am

Have relocated and as part of that relocation I am having to fill out forms that the last autism assessment psople down in South Wales did not require. These forms are the type which seem to ask simple questions but the answers come from so many different directions in my personal circumstances that there is no way I can write it all to fit in the space given, let alone try to explain where I am coming from when I write them!
And some parts I can't write such as current doctors name and address etc, as we have no doctors yet in North Wales, partly because... Yes... You've guessed it! More forms with areas I get stuck on!

Not sure about the other pages of this form, but am on a question asking "Why are you making a referral at this time?" and prior to this is the date of referral which for me was late april to very early may 2019, but it looks like the referral is of now as it looks as if I am starting an entirely new referral so it could be a very long wait. (I have only been waiting four years but I do not want to go to a start of an entirely new waiting list because I am waiting for an assessment for so .any other things, such as dentist cant remove my teeth but not allowed to refer me to a specialist until she knows I have been assessed, and then the specialist has a four year wait and the teeth waiting to be removed are...
So I could die before my teeth are seen to, let alone other issues such as the benefits people are also waiting for me to be assessed... My life has been on hold for years and it feels like it could be for my forseeable future as well!
And some of these questions I am being asked are ones that only autism professionals can answer, and I am not a professional so why am I being asked?
I am still stuck on the first page beyond the top cover page because I need to write and re-write many pages of information to answer the question and then condense and condense and condense by re-writing it several times in order for it to fit in the box provided.... AND THIS IS JUST ONE QUESTION!

At least these are paper forms. I find in no way can I fill out online forms as one can't leave things blank like one can on paper forms!


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vividgroovy
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08 Aug 2023, 6:02 pm

You are not alone in feeling that way. I despise filling out forms with every tiny fiber of my being. Within minutes of trying to fill out a form, I will be hysterical. Sometimes, I hate living in a society where so many vital services can only be accessed by filling out seemingly endless forms.



Fireblossom
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11 Aug 2023, 10:30 am

Me too, though from what I've heard, this isn't just an autism thing; most people seem to hate filling any kind of official paperwork.



Mountain Goat
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11 Aug 2023, 6:51 pm

I had done most pages but kind of messed it up a bit. Filled in bits and then found answers given related to other bits and not the parts I filled... And had to overflow and write on the back of form etc and just carried on even though I thought to myself "I am going to need to ask for a new form!"
So today I phoned them and the lady said not to worry. Just fill it in and send it off. So I have. A bit embarissing but there it is.
Some parts I messed up as was puzzled when I wrote it as to what it was saying...
Something asked about who put me forward for assessment. So I said doctor and gave doctors surgery details. Then the next smaller box said something like "Relationship with the above?" where I put "Not related", so thinking about it, they maybe asking how I know them?


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Canadian Freedom Lover
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11 Aug 2023, 11:17 pm

I can agree, being a member of the great socialist republic of Canada (Sarcasm) I have to fill out many BS forms to receive services. I am currently working with three government agencies: disability benefits, employment services, and a provincially funded agency that provides services to disabled individuals. It is almost a full time job dealing with the government and I don't know how people without family or support workers navigate the system.



IsabellaLinton
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11 Aug 2023, 11:20 pm

I deal with all that on my own. I'm not saying I deal with it effectively.
I hate it and avoid it.
I also deal with it on my daughter's behalf for her own disability insurance.
Between the two of us it's pretty much a full-time job.

Case worker? In my dreams. Who the heck manages to get a case worker?



Mona Pereth
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12 Aug 2023, 4:45 pm

Canadian Freedom Lover wrote:
It is almost a full time job dealing with the government and I don't know how people without family or support workers navigate the system.


IsabellaLinton wrote:
Case worker? In my dreams. Who the heck manages to get a case worker?


One of the many reasons why we need a better-organized autistic community.

In addition to ragtag grassroots entities like Wrong Planet (and other similar forums) and my groups that meet via chat and in-person, we also need formal nonprofit organizations, funded by foundation grants if not by the government, staffed by social workers who specialize in helping autistic people (and people who suspect they are autistic) get evaluated and navigate needed government services.

The bigger and better-organized the ragtag grassroots sector of our community is, the easier it will be to attract funding to a nonprofit professional sector that specializes in helping autistic adults too -- and the easier it will be to ensure that the nonprofit professional sector actually serves our needs, rather than just some billionaire's idea of what our needs are.

Also we need activist groups that can lobby for more, bigger, and better government services, in the first place. In the U.K. and Canada, that would probably mean, primarily, just lobbying to make the already-existing government services bigger and better-funded so the waiting lists could be shorter.


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Last edited by Mona Pereth on 12 Aug 2023, 5:08 pm, edited 1 time in total.

Raleigh
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12 Aug 2023, 4:54 pm

I would much rather fill in a paper form than an electronic form.
There's something about seeing information on a screen that my brain can't cope with, maybe due to light sensitivity, it seems so much harder to understand things.


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IsabellaLinton
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12 Aug 2023, 5:08 pm

Mona Pereth wrote:
In the U.K. and Canada, that would probably mean, primarily, just lobbying to make the already-existing government services bigger and better-funded so the waiting lists could be shorter.


I'm curious which government services you're referring to. Overall, yes, government services are painstakingly slow for all people. If you're referring to autism services for adults I'm not sure which you mean. Our autism assessments are not a government service and not part of the "free healthcare", because autism needs to be identified by psychologists rather than psychiatrists who are medical doctors. Psychologists are not covered on "free healthcare" at all, so anyone wanting an adult assessment needs to pay out of pocket unless they happen to have private insurance, or coverage through work. I sense it's kind of the same idea as in USA. *I'm not sure how it works for children, tbh.

Now that I'm diagnosed there aren't any government services for me. I'm on Disability but that's not for my Autism. It's for PTSD and strokes. The only services I can obtain are available for all people, privately, like PT, OT, SLP, Psychology, etc. We have to pay out of pocket for those too because they aren't medical doctors, and they aren't government services. The wait for a psychiatrist is years. Last I heard it was up to three years. There are some day programs for adults with Developmental Disabilities but I believe they're private, and they usually focus on physical disabilities. I'm not sure who pays for those. I've never been offered a caseworker and I don't think I'm eligible because I own a house. Home ownership disqualifies people from services, as few as they are. It doesn't matter if the house was gifted to you and you can't hold a job.



Mona Pereth
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12 Aug 2023, 6:21 pm

IsabellaLinton wrote:
Mona Pereth wrote:
In the U.K. and Canada, that would probably mean, primarily, just lobbying to make the already-existing government services bigger and better-funded so the waiting lists could be shorter.


I'm curious which government services you're referring to. Overall, yes, government services are painstakingly slow for all people. If you're referring to autism services for adults I'm not sure which you mean. Our autism assessments are not a government service and not part of the "free healthcare", because autism needs to be identified by psychologists rather than psychiatrists who are medical doctors. Psychologists are not covered on "free healthcare" at all, so anyone wanting an adult assessment needs to pay out of pocket unless they happen to have private insurance, or coverage through work. I sense it's kind of the same idea as in USA.

There should be at least a government subsidy, if not full reimbursement, for psychological/neurological evaluation services, at least for low-income people. We need activist groups that can lobby for this.

IsabellaLinton wrote:
*I'm not sure how it works for children, tbh.

In many states here in the U.S.A., health insurance (including Medicaid for low-income people and subsidized private insurance for marginally low-income people) is required to cover Applied Behavioral Analysis (ABA) for autistic children. This is something Autism Speaks successfully lobbied for a while back, and is controversial because many autistic adults have complained about how they were traumatized by the ABA they received as children.

So autistic children in the U.S.A. need coverage for less potentially harmful forms of therapy.

IsabellaLinton wrote:
Now that I'm diagnosed there aren't any government services for me. I'm on Disability but that's not for my Autism. It's for PTSD and strokes.

Here in the U.S.A., many states have something similar to New York State's Office for People with Developmental Disabilities (OPWDD), which funds various professionally-staffed private agencies to provide various services for people with developmental disabilities including autism, primarily the more severely disabled people.

There are also many autistic people who aren't severely disabled enough to qualify for OPWDD services, but do need help with navigating other government bureaucracies, e.g. for housing subsidies. Even "mildly" autistic people tend to have greater difficulty than NT's with navigating bureaucracies of all kinds.

IsabellaLinton wrote:
The only services I can obtain are available for all people, privately, like PT, OT, SLP, Psychology, etc. We have to pay out of pocket for those too because they aren't medical doctors, and they aren't government services.

Here in the U.S.A., services like PT and OT are often covered by health insurance (public or private) when deemed to be medically necessary. Not sure about SLP except insofar as SLP overlaps with ABA.

IsabellaLinton wrote:
The wait for a psychiatrist is years. Last I heard it was up to three years.

That's ridiculous. Activist groups within a better-organized autistic community could, in alliance with larger disability rights groups, lobby for more funding for psychiatric services too, so that the waiting lists could be shorter.


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Canadian Freedom Lover
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13 Aug 2023, 12:07 am

IsabellaLinton wrote:
I deal with all that on my own. I'm not saying I deal with it effectively.
I hate it and avoid it.
I also deal with it on my daughter's behalf for her own disability insurance.
Between the two of us it's pretty much a full-time job.

Case worker? In my dreams. Who the heck manages to get a case worker?


I got my support worker through my Mom's Autism agency that she use to own, otherwise I would be in the same boat as everyone else.



Canadian Freedom Lover
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13 Aug 2023, 12:19 am

Mona Pereth wrote:
Canadian Freedom Lover wrote:
It is almost a full time job dealing with the government and I don't know how people without family or support workers navigate the system.


IsabellaLinton wrote:
Case worker? In my dreams. Who the heck manages to get a case worker?


One of the many reasons why we need a better-organized autistic community.

In addition to ragtag grassroots entities like Wrong Planet (and other similar forums) and my groups that meet via chat and in-person, we also need formal nonprofit organizations, funded by foundation grants if not by the government, staffed by social workers who specialize in helping autistic people (and people who suspect they are autistic) get evaluated and navigate needed government services.

The bigger and better-organized the ragtag grassroots sector of our community is, the easier it will be to attract funding to a nonprofit professional sector that specializes in helping autistic adults too -- and the easier it will be to ensure that the nonprofit professional sector actually serves our needs, rather than just some billionaire's idea of what our needs are.

Also we need activist groups that can lobby for more, bigger, and better government services, in the first place. In the U.K. and Canada, that would probably mean, primarily, just lobbying to make the already-existing government services bigger and better-funded so the waiting lists could be shorter.


Where I live in British Columbia we have a very vocal Autism community. Services for Autism are some of the best funded as compared to other developmental disorders like Fetal Alcohol Syndrome or Downs Syndrome. All this considered we are still lacking as far as accessibility and efficiency is concerned.



Mona Pereth
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13 Aug 2023, 12:59 pm

Canadian Freedom Lover wrote:
Where I live in British Columbia we have a very vocal Autism community. Services for Autism are some of the best funded as compared to other developmental disorders like Fetal Alcohol Syndrome or Downs Syndrome. All this considered we are still lacking as far as accessibility and efficiency is concerned.

Do the services include any services for autistic adults other than the most severely disabled (Level 3-ish) ones? If so, what kinds of services?

Also, are the local advocacy groups just parents' groups, or are there some local autistic adult self-advocacy groups too?


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Canadian Freedom Lover
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27 Aug 2023, 12:56 am

Mona Pereth wrote:
Canadian Freedom Lover wrote:
Where I live in British Columbia we have a very vocal Autism community. Services for Autism are some of the best funded as compared to other developmental disorders like Fetal Alcohol Syndrome or Downs Syndrome. All this considered we are still lacking as far as accessibility and efficiency is concerned.

Do the services include any services for autistic adults other than the most severely disabled (Level 3-ish) ones? If so, what kinds of services?

Also, are the local advocacy groups just parents' groups, or are there some local autistic adult self-advocacy groups too?


Sorry for the taking so long to respond I have been busy with work.

Anyway all functioning levels of Autism are covered by the services in my province. The only problem that you run into if you have high functioning Autism is that many service agencies will accept you as a client but you may fall to the bottom of the list because their lower functioning members take more resources.

There are many services that you can tap into here although I am only knowledgeable about the ones I am currently receiving services from. I am on permanent disability benefits which is basically just supplemental income for people with disabilities. I am also working with a provincially funded organization that offers many services for people with disabilities that is helping me to look for and secure subsidized housing. I am also receiving services from employment services to help me find a new career and will pay for me to retrain for my new job.

I hope this answers all your questions.



Canadian Freedom Lover
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27 Aug 2023, 12:58 am

Mona Pereth wrote:
Canadian Freedom Lover wrote:
Where I live in British Columbia we have a very vocal Autism community. Services for Autism are some of the best funded as compared to other developmental disorders like Fetal Alcohol Syndrome or Downs Syndrome. All this considered we are still lacking as far as accessibility and efficiency is concerned.

Do the services include any services for autistic adults other than the most severely disabled (Level 3-ish) ones? If so, what kinds of services?

Also, are the local advocacy groups just parents' groups, or are there some local autistic adult self-advocacy groups too?

Oh and the advocacy groups are mostly parents but some are ran by autistic individuals.