poor services good services

Muddled1 said:

I mean the fact that a lot of people with autism are struggling in one way or another with social services and support. Does anyone know if there is a way to establish which parts of the country have poor services and which have good services.

The nearest official thing is the Autism Self-Assessment Framework. As the name suggests though, this 'SAF' is filled in by local authorities themselves without a common standard or audit. It should give an indication of the quality of diagnostic services, but says little about post-diagnostic support.

Muddled1 said:

A tab under username with location might be an option to make it easier to identify which users are in your area are also having bad times with their social services department and which services they have found useful.

I think this is a great idea. What would NAS Moderator and @WebPM say to it being an NAS project?

If not, maybe it could be set up as a separate website, with autistic people and families contributing reviews of local services, and you could add information about number of workers, who's paying for them, council or CCG, plus information from the SAF and any relevant information from the local Joint Strategic Needs Assessment. A lot of the time central government leaves this to local autonomy, which makes sense to an extent, but there's no proper sharing of good practice, and it would be in the interest of the DoH (now DHSC) to fund such a project.

It can't be beyond the wit of aspiedom to set up such a website. Maybe can discuss it at Autscape.

Muddled1 said:

There doesn't seem to be anyone making sure councils are doing what they are supposed to under autism and care act.

Indeed some are talking about taking it to the courts. I've no experience of people using the Local Government Ombudsman.

In theory your local authority should have an Autism Partnership Board or similar. I don't want to indicate my area as it shows too much about me (not enough to worry rule 2 of this site, I just don't want to), but these should be used to link in as many autistic people locally as you can get informed about the process. 'Nothing about us without us' makes even more sense when most council commissioners actually know almost nothing about autism, and it needs to be distinguished from learning disabilities and mental health care.

Are you in contact with anyone in local services who you can ask about council decision-making structures? You could also find which councillors are involved in social care committees or Health and Wellbeing Boards. Also if you want to do things for local autistic people, I'd suggest building alliances with parent groups, your local Healthwatch, mental health user groups, and advocacy services.

It's very slow progress and there's so much work to be done. If you get anywhere, please let us know.

Muddled1 said:

I mean the fact that a lot of people with autism are struggling in one way or another with social services and support. Does anyone know if there is a way to establish which parts of the country have poor services and which have good services.

The nearest official thing is the Autism Self-Assessment Framework. As the name suggests though, this 'SAF' is filled in by local authorities themselves without a common standard or audit. It should give an indication of the quality of diagnostic services, but says little about post-diagnostic support.

Muddled1 said:

A tab under username with location might be an option to make it easier to identify which users are in your area are also having bad times with their social services department and which services they have found useful.

I think this is a great idea. What would NAS Moderator and @WebPM say to it being an NAS project?

If not, maybe it could be set up as a separate website, with autistic people and families contributing reviews of local services, and you could add information about number of workers, who's paying for them, council or CCG, plus information from the SAF and any relevant information from the local Joint Strategic Needs Assessment. A lot of the time central government leaves this to local autonomy, which makes sense to an extent, but there's no proper sharing of good practice, and it would be in the interest of the DoH (now DHSC) to fund such a project.

It can't be beyond the wit of aspiedom to set up such a website. Maybe can discuss it at Autscape.

Muddled1 said:

There doesn't seem to be anyone making sure councils are doing what they are supposed to under autism and care act.

Indeed some are talking about taking it to the courts. I've no experience of people using the Local Government Ombudsman.

In theory your local authority should have an Autism Partnership Board or similar. I don't want to indicate my area as it shows too much about me (not enough to worry rule 2 of this site, I just don't want to), but these should be used to link in as many autistic people locally as you can get informed about the process. 'Nothing about us without us' makes even more sense when most council commissioners actually know almost nothing about autism, and it needs to be distinguished from learning disabilities and mental health care.

Are you in contact with anyone in local services who you can ask about council decision-making structures? You could also find which councillors are involved in social care committees or Health and Wellbeing Boards. Also if you want to do things for local autistic people, I'd suggest building alliances with parent groups, your local Healthwatch, mental health user groups, and advocacy services.

It's very slow progress and there's so much work to be done. If you get anywhere, please let us know.

Hi Cassandro hi all. Thanks for your replies and suggestions. This is a bit of a muddled collabiration of a response. I hope it makes some sense. In my mind the reply from Blueray comes more from a social workers perspective than a person with autism. There really shouldn't be any need for disabled people to shout to get what they need. Then again there shouldn't be anyone using food banks...so I can only say that sadly you're correct and it is a reality that those without a voice go unnoticed and really lack the help they need. Maybe the help is to be found in a support group maybe its not. I think its a really good recommendation for some but not essential.

Some of us are totally disinterested in group activities but that doesn't equate to we enjoy being isolated and housebound. It just means we want to go out but perhaps with one or two people. Support workers if necessary. However budgets don't get everyone what they need. And generic untrained social workers without knowledge of autism don't help either. Job title doesn't matter but training does. And training seems to be lacking in my county because I had to speak to my out of county autism diagnostician who then got a colleague with training to seek out the best person to help in my county. But unfortunately they came back saying there should be someone to assist you. It doesn't inspire faith in the local social workers abilities and knowledge.

In my humble opinion if you don't have autism and don't often feel disabled and non functioning due to having it...or if you can't diagnose autism. Then its crazy to even begin to claim to know what help each individual needs. UNLESS of course the social worker is really are willing and able to LISTEN to what the person in need is trying to say. And is willing and ABLE to make a workable care plan happen. There will always be too many struggling and left in need.

Advocates might be useful to help a person get heard. BUT even STARTING A CONVERSATION regardless of content can be difficult if not impossible. How someone thats been in isolation for a week month year is expected to manage to communicate with anyone fails to register with professionals. Its easy to become totally mute when theres been no contact with another human being in a long long time. Where would anyone that began life mute and never started to speak begin. There families ? and if they fail to get their voices heard ? the courts ? Because professionals are often a let down. The cause of more harm than good. And they easily blame the autistic because we can apparently be occasionally very difficult and very hard to communicate with.

I would suggest that inability to ask for help coupled with not getting heard when we do speak leads to further stress and frustrations which in turn cause shutdowns meltdowns depression. All of these extra problems are probably a big contributing factor when autistic people kill themselves. When nobody is listening to your best LOUD VOICE why would the Samaritans be any different. Why would they care when nobody else appears to.

I was going to say I am a bit surprised the advocate mentioned here is linked to mental health and isn't autism specific. But I'm not. Because people with autism often have mental health problems. Some of them not initially. Some began life happy. BUT THEY DEVELOP mental health problems because they are lost in their own bubble in their own plot...and nobody is really trying to pull them out. At this point in time, at best, if autistics had wheelchairs they would be pushed next to the sunny window and left. They would be told to do everything else for themselves because being reliant on others makes you weak. They would be made to feel bad because they can't travel without assistance and made to feel disgusting because they forgot to wash for the 5th day in a row. 

Often people with autism have nobody to pull them out of the mess that surrounds them. Nobody except hard to TRUST strangers. And it is hard to trust strangers after a lifetime of problems with family friends and so called friends.

AUTISTICS are said to readily remember negatives caused by teachers advocates government employees police courts the general public. While its true we need to work towards self empowerment. ITS ALSO TRUE THAT WITHOUT FAMILY AND FRIENDS self empowerment takes a lot more SPOONS than it might do without families immediate and initial prompting encouragement and support...And in some cases without someone to plan a journey and accompany on a journey all the self empowerment speak means nothing. FACTOR IN PDA and the person isn't going to try help themselves anyway. Easily ACCESSIBLE autism specific advocates might be helpful to some without PDA and family support. A QUICKLY answered chat or email service would be better than waiting on a phone for 20 minutes and much less annoying than waiting 3 weeks for a reply to an email.

There aren't any advocates trained in ASD in my locality and the council won't engage the advocate recommended by NAS because of money money money. We managed to get on and they seemed to understand my problems. Even if the local advocate that isn't INDEPENDENT of the council got  trained we didn't connect and she didn't listen/communicate my needs. In fact they won't engage with me because I said the budget was inadequate and wouldn't meet my needs. The replacement lasted 5 minutes. It took one arrogant presumptuous email for me to dislike him. And thats all it takes sometimes. However saying please leave me alone after begging for assistance for 2 months shouldn't have resulted in the entire department saying bye bye enjoy the eligible needs we bothered to establish and the ones we don't know about or haven't considered. Its ridiculous. Some autistics say a lot of things they don't mean. Especially when stressed or under pressure. Especially when they lack any idea of danger and consequence and the listener takes them literally. FOR ONCE.

Almost everything else is ignored except leave me alone. From OCTOBER-DECEMBER beg beg beg !!!! help help help !!! "no no no" AND from APRIL-???? IGNORED. And yep disabled people are being forced into A SHOUTING CONTEST AMONG THEMSELVES. DISABLED PEOPLE SHOULDN'T BE FORCED INTO FIGHTING EACH OTHER TO GET WHAT THEY NEED. They shouldn't be required to go chasing people that make them shout beg or whatever. A DIAGNOSIS SHOULD AUTOMATICALLY TRIGGER A NEEDS ASSESSMENT and those needs should then be met. A difficult client shouldn't be a reason to quit and leave those needs unmet.

I just hope things are a bit better for autistic kids. Though I'm unsure it is. I'm unsure if there are even diagnosis services for kids or adults in my area. I had to travel out of area for assessment last year. And there seems to be one social group that meet down the PUB (great location when 20 years ago drinking a bottle of whiskey was a way to cope with the mystery in my head). Other than the pub there seem to be no other options for those that want to meet others. AND should you be one of those that simply want and need one to one support in order to leave the house to use the bus to walk the zoo....forget it. I've requested information from the council about boards and stats but that was ignored. And thats no surprise. IGNORANCE is what they are best at. Which is one reason I am interested in mapping where in the UK offer good services and where offer poor services. Council staff writing their own reviews amount to nothing so having service users and potential service users write their own reviews might help someone somehow.