Published on 12, July, 2020
I am very concerned, as I am sure that many other people affected by autism will be, of changes to adult social care that are being put forward by Government. Recently I attended a protest outside County Council, protesting against a proposal to take away support from disabled adults who are deemed to have moderate needs. I have been classed as having substantial needs, but with some moderate elements, and I am very worried by these changes. I am aware that many councils already restrict support to those with substantial or critical needs, but this does not make it right to limit support in this way. Autism, and asperger's in particular, is a very complex disability and its presentation can often be subtle, hiding a very significant disability that can only be fully appreciated after someone has really got to know the individual concerned. Moreover, people with autism can have good days and bad days. THey may be 'moderate' part of the time, but if they experience any stress their condition can deteriorate to such an extent that they become critical in a very short space of time.
I do not believe that these changes have been fully thought through. THe changes will not save money. On the contrary, when support is taken away from people it is likely that many will end up in acute psychiatric care, which will be totally unnecessary as preventative care in the community would prevent the need for this, at far less expense.
I have a fantastic support package which has enabled me to undertake voluntary work and to be active in the community. Support helps me to live an independent and fulfilling life. I have no friends and no social network; without support I would be isolated. I dread to think what would happen if my support was decreased or even taken away. I need routine and security in life in order to function. The support has provided me with a safe security blanket from which I can test the waters and take a few independent risks. I volunteer at several places completely on my own because I know that I see a support worker at regular intervals who can provide me with reassurance. Support for me is a great enabler: it makes me more independent and provides me with a sense of control and structure.
I would love to hear from other people about the support they receive, and whether or not they are concerned by the proposed changes
I had 2 assessments last year it was mental health team turned me down pushing charities and other things to help from housing counciling mental sheath matters CAB for managing my money going cooking group this group that group. To many for me to deal with. I don't fit critira yet had one to one all my life. Then I complained and get disibilty team they do assesment and said same. I have lots of health needs had falls and last one on the stairs I landed up with free care has such a break I had and a op on the tin and fib. My eldest son called and said clearly she fits more that 3 things plus she has my 21 year old autisic brother at home and has lots more needs and struggling. And has he lives far but a carer said what about a muti agency meeting has being pushed from one social care team and has complex needs and clearly needs health and social care has well need I say more.
Since that we hear nothing I also going deaf I now 51 need to move but I got no idea about using all these agencies they call I don't hear! Some will let me call back with relay uk but most still call! Some hang up on the relay uk. Even my GP don't have online access to book face to face appointments. Indeed I fit critira but health autism and anxieties no mental health takes me on I not selfharming suisidle so not interested. The amount of times theropy been tried it don't work because I prossess it differently.
If medicated does cause me to self harm even prescription drugs like cosine lots of pills cause gastric issues so I don't get medicated no more.
I get no current help on a one to one me and my son have a unsafe home we can not cook we clumsy and dangous we in debt. He goes day centre twice a week he gets 4 hours one to one but sadly they don't use that time because they won't come in the home to help him cook has too dirty and messy we have no routine we have lack of skills and motivation. It's a very unfair system and no support only my son saying they need to call him has next of kin. Yet they still say they will .ca me what laughs.
Mums home is falling apart and bidding nothing comes up to suit my physical issues or help tom with sensory like bath with shower so he can take baths. They only let us bid on complexes piper alarm places. Ground floor places. So not much choice to stay close to my mum in care home. And in same town has son's day centre. They won't pick him up if we move out of town we don't do public trasport we see my mum lots and I was raised in this home. My kids was looked after by my mum when I had issues. Ops or in hospital or needed recovery. Instead of supporting me they leave us surly that's a safeguiding issue!
I don't like the new systems it's leaving folk like me and my son at a safety risk. When In my 20s I set my kitchen on fire. Because I forget it's even on.
Pancake day this year we set pan on fire son got mild burn and rest was not edible so we had none.
We both cried. My advocote us less and never done my complaints I did I need ombistman but don't understand what's required on there web page I write to them the complaint and say I need to fill the form out I not well educated either.
No one helps me. No one's alone when it comes to this NAS get all this charity stuff money they need to sort advocotes to give us a voice there's not one autism charity that covers my area. It's sad I would even pay I so desperate.