Published on 12, July, 2020
I went to my doctor on Thursday and told him I'm not coping (mainly because of the loneliness); he says he can't phone support worker companies for me to help me get a support worker, despite the fact that that's exactly what I need. And apparently there's nothing else he can do.
If I can't get help from the NHS when I'm depressed, and social services won't give me a support worker, where am I supposed to get help from?!!
The help I probably need most right now is for someone to phone the support worker companies that aren't replying to my e-mails.
Social services assessed me as needing 8 hours per week of support back in 2004; and they've never provided it!
Being so shy is crippling me. If I can't e-mail people and get a response, I can't get anywhere!
The issue seems to be one of communication or more specifically the lack of.
I don't do phone calls either. As autistic people we have rights to reasonable adjustments and for communications to be in a format that works for us. Many autistic people find phone calls extremely difficult or impossible. The reason for this is usually a result of auditory processing difficulties and the lack of visual clues over the phone. The issue can be a huge barrier in some areas of life.
I do not think that being shy is at all relevant and using that term may lead to further misunderstandings about what support and reasonable adjustments you need as an autistic person.
I share your frustrations when organisations and businesses simply ignore your emails or respond indicating that the only way to resolve an issue is by telephone. Then when you try to explain they just say get a friend, family member, support worker, care worker, etc to call for you. They really have no idea that there is absolutely no support out there and many autistic people have no such people in their lives that they can turn to.
Part of the problem is the system is broken and resources have been cut to the bone. In my area at least mental health services will not support autistic people. They decline all referrals and insist that autistic people are the responsibility of social services. Unless the person also has extremely high support needs, due to physical or learning disabilities, then basically social services don't want to know.
Social services should be clearly communicating to you what you are entitled to, in a format you can understand. I'm not an expert but I don't think the support worker companies can communicate directly with you unless they have been engaged by social services. That may be why you're not getting any response from them. I also suspect that any assessment done in 2004 would no longer be in place unless it specifically stated that the support was for life. The trouble is if you request an updated care assessment from them it will probably just confirm that, in their view, you're not entitled to any support.
Autonomistic said:As autistic people we have rights to reasonable adjustments and for communications to be in a format that works for us
Do we?
Aside from the legally enshrined rights from employers (which is seems not many bother to actually implement from what I read on this site), I don't think we have the right to make any company we chose to interact with implement something suitable to our needs.
I honestly don't know the laws around what GPs have to provide, but most of them lack the staff and budget to implement these sorts of schemes and staff them.
It would be useful if anyone knows of the laws around this.
I'm not sure why you're focussing on what GPs may or may not provide. The OP in this discussion has already managed to see their GP but has been turned away without any help. The mention of emails was in relation to support worker companies and social services.
Thanks, that is helpful. Looking at the details:
Adjustments only have to be made if it’s reasonable to do so. What’s a reasonable thing to ask for depends on things like:- the size of the organisation (most GPs have less than a dozen staff, so really small)- how much money and resources are available (not much and there are probably people in greater need than us)- the cost of making the changes (£10-20k for the email hosting service and staff time to check, read, relay to a doctor and send back to you)I don't know if email communication is seen as secure enough for discussing what may be sensitive personal info though. With emails so easily hacked and spoofing rampant I think there are serious security concerns around using email.
Will it also only be available to people who meet the criteria as disabled?
A more secure system would be significantly more expensive so even less chance of it being setup.
I guess these reasons are why we don't see more of the reasonable accommodations.
Yes we do have rights under the Equality Act 2010
https://sheffieldautisticsociety.org.uk/information/reasonable-adjustments/
https://theconversation.com/dehumanising-policies-leave-autistic-people-struggling-to-access-health-education-and-housing-new-review-202997