Community issues and AS

NAS11521 said:

While I agree with what you say here, I  think the reality is that parents are faced with so many problems in getting the right treatment/support for  their children that they are reluctant to see money or time 'diverted' to adults on the spectrum.

In addition, they need to believe that their children will achieve a happy and productive life in the NT world and being confronted with young adults who are facing problems is something they find negative and maybe don't want to think about.

Which is not only a case of burying one's head in the sand, it's also utterly counter productive!!!

We 'adults on the spectrum' were once 'children on the spectrum' and the current crop of 'children on the spectrum' will grow up to be 'adults on the spectrum'.

So, pushing for support of current adults on the spectrum, now, can only be a good thing for all the current and future generations of children on the spectrum!

It isn't just about us, it's about them too!

Well I shall continue to challenge my local authority about how they address autism, adult or otherwise, but I understand most people on here probably dont want to do that.

While I agree with what you say here, I  think the reality is that parents are faced with so many problems in getting the right treatment/support for  their children that they are reluctant to see money or time 'diverted' to adults on the spectrum.

In addition, they need to believe that their children will achieve a happy and productive life in the NT world and being confronted with young adults who are facing problems is something they find negative and maybe don't want to think about.  Even more so, perhaps with, mature adults since if people who have - outwardly - managed to work and have - even to a limited extent - a successful relationship why shouldn't they be thankful with what they've achieved and not want money diverted from children to pay for diagnoses and support.

I have seen too many comments to this effect (not, as a rule, on this board) to doubt this is why we don't get support from parents' groups. 

Sorry to be so depressing, but it needs to be said.

If only the parents' groups would consider whether their purpose extends beyond children up to transition, and also pay attention to adults on the spectrum. The children are growing up.

We have a bizarre situation where there is a strong campaigning voice for children and teenagers, but little voice raised for adults. There needs to be an equally strong body of people speaking up for adults, especially at county and district level.

My county council is failing adults on the spectrum because there are too few people to stand up and make it clear that adults should be treated no less well than children and teenagers on the spectrum.

If the movement extended its influence to adults, across every county (despite dwindling resources) we would have some hope of ensuring fair play for all.

That makes depressing reading, Longman. 

I've continued to chase my local authority on its response to "Leading Rewarding and Fulfilling Lives.

The latest I have from them is a letter pointing out the results of the Initial Findings report by the Learning Disabilities Observatory, which looks at the regional variations in whether local authorities have graded their responses to the self-assessment form green, amber or red.

They are quite cocky that they've performed better than average for the number of questions they rated green or amber.

However they aren't implementing separate provisions for people on the autistic spectrum. Rather they are using their existing Learning Disabilities Partnership Board to provide for people on the spectrum ONLY if they have a learning disability. They confess to having little understanding of autism needs.

This from a local authority that declared in response to the December 2010 NAS questionnaire that they would have an Autism Partnership Board by the summer of 2011 and also all their training underway. Whereas they haven't done any training but have made most of their autism team redundant! 

So in consequence, they were not entitled to give green or amber answers to any of their questions. Indeed they are probably amongst the worst respondents.

Thanks True Colors.

The worst of it is I cannot seem to get any back up from anywhere. I've emailed my local parents' group (of which I'm a member) several times to ask what's happening - Dead Silence.  I've emailed the local NAS team - Dead Silence. I've emailed campaigns at NAS - Dead Silence. So I cannot find out why this happened or whether anyone else is going to do anything to rectify the situation.

Since my county council sent me their self assessment form I've had nothing further out of my local authority. Maybe they thought I'd be so overawed by their submission I wouldn't have noticed that they hadn't done what was asked of them.

The "NAS Adult Autism Strategy - 18 months on" presentation asks us to "Arm us at the NAS - regionally and nationally - with local intelligence".  This is futile as nobody responds.

I've seen the record of the on-line debate, everybody seems to think NAS has failed, and the lack of response makes me wonder.

I guess you may be right - True Colors - nothing is going to happen until there's enough of us, desperate for help, to force the issue.

"Rather depressing picture...."

Yes it is.  I think the problem could be that there are not enough adults diagnosed as being on the spectrum to make an impact on local authorities.  Once those who reached adulthood before the condition was recognized start pressing for diagnoses (which many local health authorites presently refuse to provide) then I'm certain  the situation will change.

May be too late for some of us  though!

I made a further attempt to get some insight frpom the Department of Health. I just got a standard reply to the effect I just have to keep trying with my local authority, and if not successful my MP or the local government ombudsman.

So it sounds like the Government action on this is going to be all wind. If your local authority takes it seriously well and good. If your local authority ignores it, nothing much you can do but protest through routes that are notoriously difficult.

So what does "Leading Rewarding and Fufilling Lives" really amount to? I guess its just a gesture that government cares.....but not that much.... don't call us, we'll call you.

Rather depressing picture....

Some local authorities have put their Local Self Assessment of Adults with Autism forms on line, eg Hampshire and Shropshire.

Hampshire seemed very brief and rather vague. Shropshire's looked very in depth and had links to other local authorities they are working with. Both have made a better job of it than my own though - they have figures.

It looks like there could be quite a wide variation in the quality of responses. There also appear to have been difficulties filling them in particularly the 1000 character limit per box, and problems with saving on completion..

Apparently the self-assessment exercise was issued 20th December as a letter to all Directors of Adult Social Services in local authorities and the deadline for councils completing the forms was 10th February.

This is part of the Adult Autism Strategy - Fulfilling and Rewarding Lives -Evaluating Progress - Next step in the national self assessment framework exercise.

www.dh.gov.uk/.../DH_131923

The data is being analysed by the Public Health Observatory for Learning Disability. According to the above preliminary results would have been known by the end of February and graphs and tables produced by late March. Does NAS know about this?

There were 7 Quality Outcome sections covering better healthcare, employment, accommodation services, health & social care, inappropriate involvement with criminal justice system, service planning and satisfaction surveys. There were three Service Ambition sections and some general questions. Councils were supposed to indicate the numbers of people with autism in their areas.

How many local authorities have done this properly?

I've had a reply. It seems the Learning Disability Partnership Board can cover autism if someone has a learning disability - I think they mean they can help with the learning disability bit.  They don't seem to know anything about autism and they spell Aspergers as Aspbergers.

They don't know how many people have autism but they are guessing 1%.  They don't have any autism specific knowledge so no autism awareness training.

Is my county council unique in this respect?

Needless to say I'm still waiting for a reply from the latest identified lead officer and the contact person I've been given for the Learning Disability Partnership Board. Like the previous contacts I've been given that never get back, this one is likely to be a wasted effort.

What is the point of the Autism Act and all the campaigning if local councils can just ignore their obligations?  This is what I got from the Department of Health:

"Suggestions that local authorities consider establishing an autism partnership board and introduce a lead commissioner for local autism services are made in ‘Implementing Fulfilling and Rewarding Lives: Statutory guidance for local authorities and NHS organisations to support implementation of the autism strategy’, which was published in December 2010. The document can be viewed on the Department’s website at:
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_122847.

Regarding autism partnership boards, the first bullet-point under the title ‘Supporting improved local planning and leadership’ on page 26 of the guidance states that:

‘The strategy suggests that “local partners may also want to consider establishing a local autism partnership board that brings together different organisations, services and stakeholders locally and sets a clear direction for improved services.” In some areas, existing structures may fulfil the same purpose – such as Learning Disability Partnership Boards and Mental Health Local Implementation Teams (LITs). Local Health and Wellbeing Boards will also have a related function.’

In relation to naming a commissioner for autism services, the first bullet-point under the heading ‘What this means for health and social care’ on page 24 states that:

‘Local authorities should allocate responsibility to a named joint commissioner/senior manager to lead commissioning of community care services for adults with autism in the area. This named commissioner should participate in relevant local and regional strategic planning groups and partnership boards, to ensure that the needs of adults with autism are being addressed.’

.............................In the circumstances it is clearly not happening.

Having started this thread on the subject of reprsentation on community forums, I was neatly side-tracked into trying to find out what my county council was doing about autism.  And it is vitally important surely as we keep being asked as NAS members to write to our MPs or council scrutiny committees, but how many councils have actually set up commissioners/leads for autism and autism partnership boards?

My council had declared on the NAS website in January 2011 that it already had an autism lead, and expected to have an autism partnership board set up within 6 months. Ever since then I've been trying to contact it. I've been as they say "passed from pillar to post" or rather from one alleged lead officer to another.

I've now been told that my county council is using its existing Learning Disabilities Partnership Board. I've written to the contact person for this, so far no reply.But my county council's website, while it has pages for learning disability, there is nothing stated about autism. There is nothing anywhere to tell people that the Learning Disability Partnership Board is substituting as the Autism Partnership Board.

According to the Department of Health a council can use an existing body like a Learning Disability Partnership Board, as long as they can demonstrate that it achieves the same objectives as an Autism Partnership Board. But if no-one knows this is what is being done, how can this be a meaningful substitute?

Has anyone else tried to find out what their local authority is doing for autism?

Since I wrote this I tried again and got a reply telling me the name and phone number of "Someone who deals with these matters", but the person is away for three weeks.

NAS did a survey of local authorities' intentions with regard to the Act. My county council responded in January last year saying they already had an Autism Lead in place. Maybe the "someone who deals with these matters" is the lead officer, but it ought surely to be something easy to find out.

My council also said in January last year that they would have an Autism Partnership Board in place within six months, but a year on there's no trace.

Other councils it appears made promises over a longer term, but are they any nearer meeting these obligations. If it is so difficult to find out what's really happening it makes a mockery of the new legislation.

Does anyone else have any insight on this?

Hi Sarah,

Thanks for responding to this. Unfortunately there are very few such boards set up and my county council certainly hasn't got one.

I keep trying to find out what my county council is doing but am "hitting a brick wall".

I emailed the Adult Care team and the chair of social services committee 11th December but have had neither acknowledgement or reply. I asked why the Autism Spectrum Team only covered up to age 19 and why adults with autism were unspecified under Adult Care Services. There is nothing about adult autism on their website, and autism seems to fall in a gap between learning disability and mental health.

When NAS put up a rougues gallery of non respondent councils two years ago mine was amongst the zero responses. When NAS asked us to write to the Chair of the appropriate committee of our local councils, I waited months for a response which just said they were working on it. I subsequently asked who had been appointed to lead initiatives following the act and was told the appointment was unconfirmed and I couldn't be told who.

My county council has made drastic cuts in many areas of disabled support services to save money. The committees I was on for over a decade up to a year ago were set up by the town council. However Autism provision comes under the County's juristiction.

Unfortunately the Autism Act implementation seems difficult to ratify or enforce. It would perhaps be useful to know what others have experienced.

Hi Longman,

It's great that you are interested in getting involved and championing the needs of adults with autism in your area.  You don't mention which area or local authority you live in but my recomendation is to check first of all whether your county/borough has an Autism Partnership Board.  If it does, great - you could get in contact with them and offer to serve as a member of the board.  Setting up local partnership boards was a recommendation made in the Adult Autism Strategy and membership must include people with ASD as well as senior representatives from local service providers such as education authorities, care services, NHS PCTs, the police and so on.  You can read all about partnership boards at this link http://www.autism.org.uk/en-gb/working-with/autism-strategy/local-planning/autism-partnership-boards.aspx

You can check to see whether there is a board for your area.  If not, it may be worth writing to the Director of Adult Social Services at your local council to enquire about their progress in setting up a board and offering, as an adult with autism, to become a member.  

Hope this helps!  Good luck,

Sarah