Implementing “Fulfilling and Rewarding Lives'http://http://www.dh.gov.uk/en/Consultations/Liveconsultations/DH_118058

I laughed until I cried and then I really did cry because the Autism Act is no longer an Act it is a farce, a pantomime, an insult to a community who have waited years and years for measures to be taken to meet the needs of their community, only to find that we were in the wrong place at the wrong time.

I do not know who I am most upset with. The Labour Government, who after 13 years in power must surely be deemed responsible for the mess that we currently find ourselves in or the Conservative and Liberal Democrat Coalition Government who are coldly and callously pulling the rug from underneath us without so much as a sideways glance.

I am becoming more and more alarmed at being constantly punished for daring to give birth to two sons who reside on the autistic spectrum. I am becoming more and more distressed that my sons, who certainly never asked to be autistic, are being ignored and are ineligible for provision yet again.

When I first read "Fulfilling and rewarding lives" The National Adults Autism Strategy (which did not in my opinion reflect the vast majority of recommendations made by the External Reference Group in their final document that was handed over to the Department of Health) I commented to the CEO of the NAS that it was once again going to be left to people who were already burnt out and totally exhausted to fight for the provision that their adult children and the adults themselves, so desperately need at a local level. I know that he did not share my pessimistic view of the strategy at that point.

I am fast turning into a glass half empty kind of person and could clearly see that the strategy was not going to deliver the promise that so many of us had hoped it would. So today when I was officially sent my copy of 'Implementing "Fulfilling and rewarding lives": Consultation for statutory guidance for local authorities and NHS organisations to support implementation of the autism strategy', I was not expecting any drum rolls nor any hidden little extras which had perhaps been slipped into the document in a bid to sugar coat the cuts which are already making their presence felt.

Having been convinced that section 7 guidance would indeed make an impact, despite my protestations of impending doom, I was at least expecting to find some hope that things might in some small way improve. It is difficult to be hopeful when a consultation that is meant to be shaping the future for autism clearly spells out in it’s executive summary- that the guidance

‘underlines the importance of using existing processes and resources to achieve outcomes. For example, the guidance stresses the importance of the provision of autism awareness training for staff, but emphasises that this can be delivered as part of existing equality and diversity training, or similar programmes. This is particularly important given the financial constraints that all public sector organisations are currently working under, and the need to demonstrate value for money. The guidance also places a clear emphasis on local areas finding the best ways to meet the needs of adults with autism in their area.'

I am already beginning to see the bigger picture. The executive summary continues - that it is

‘essential to underline that all government departments are currently undergoing a spending review that is due to complete in October 2010. This consultation does not seek to pre-empt the outcomes of that spending review. This means that any statement within this draft guidance which relies on, or implies, additional resources is subject to review.’

I realised at this point that the writing was not only on the wall. It was underlined on the wall!

The hammer blow was delivered in the final paragraph to be found in ‘About this Consultation’

‘This means that in some cases the guidance may not place as many expectations on health and social care bodies as some respondents may wish.’ It is important to underline therefore that this guidance – though having legal force as explained below – is not set in stone. It will be reviewed regularly and revised as appropriate, as the evidence base develops on how best to support the needs of adults with autism to live independently as equal and included citizens.'

I was not sure that I wanted to read anymore at this point but I felt the need to see if there was going to be any gains from Implementing Fulfilling and Rewarding Lives.

We are constantly reminded that we are most certainly in the wrong place at the wrong time, and as I had voiced some months ago we are indeed going to have to battle with our individual Local Authorities and Health and Social Care providers.

‘This draft guidance should also be seen in the wider economic and public spending context. It is important we understand the full costs and benefits of proposals which would require additional investment or redistribution of funding. These will be assessed as part of the spending review. In addition, the government has made clear its commitment to promoting the radical devolution of power and greater financial autonomy to local government – offering increased flexibility for local authorities and services to make decisions that best serve their communities.’

The consultation document does state that the guidance must be treated as if it were section 7 guidance but I am still wondering where the bite that can be felt from section 7 guidance is going to be necessary. Here are some examples of what we are being consulted about.

‘Each local authority should consider appointing a lead professional to develop diagnostic and assessment services for adults with autism in their area. This should be done in conjunction with the Local Strategic Partnership.’

‘Once the NICE clinical guideline is published, NHS bodies and NHS Foundation Trusts that commission or provide diagnostic and assessment services should review their diagnostic processes and services against NICE’s best practice guidance. The aim of this is to make the diagnostic process more accessible and consistent.’

‘It is important that diagnosis of autism should open up the opportunity for the adult diagnosed to receive an assessment of their needs. To enable this to happen, healthcare professionals who make a diagnosis of autism should inform the adult diagnosed, and/or their carers, that under the NHS and Community Care Act 1990 local authorities have a duty to carry out an assessment of needs if the adult diagnosed asks for one (and it appears to the local authority that they may be in need of community care services).’

'This does not require healthcare professionals to conduct an assessment. Instead, it focuses on raising awareness that local authorities are under a duty to conduct an assessment if the adult diagnosed contacts them and appears to the local authority to need community care services. In this way, the emphasis is placed on joining up services, so that those diagnosed with autism are able to get the support they need – if they need it.'

If they need it!!!! Part of the problem is that some autistic adults will not know that they need support and services and yet it is being left to adults themselves, who let us not forget have a recognised problem in communication, to come forward and ask for an assessment. Perhaps there is a need for awareness raising training deep within the machine.

Providing information post-diagnosis

‘Diagnosis of autism can be a life-changing moment for both the individual and their family. Therefore it is important that adults diagnosed with autism are given access to information about autism and about sources of support – even if they do not qualify for care services following an assessment of needs. These should include:
• Contact details for local autism support services and voluntary groups
• Contact details for national autism representative groups
• Signposting to the “Living with Autism” section of the NHS Choices website, www.nhs.uk/Livewell/Autism/Pages/Autismhome.aspx’

Yes let’s add to the work load of the voluntary support services, remembering the financial constraints that the cuts will bring with them will also impact on the voluntary support services.

‘We will also explore the cost and benefits of issuing guidance to local authorities, NHS bodies and NHS Foundation Trusts to appoint a lead professional to develop diagnostic services for adults with autism in their area.’

Current duties

‘There is no specific duty to identify adults with autism – and the strategy could not, and does not, impose one. However, as in all areas of health and social care, staff are encouraged to be aware of potential signs of a condition and to adapt their behaviour as appropriate.’


‘Local authorities, NHS bodies and NHS Foundation Trusts should consider what autism awareness training is made available to all staff working in health and social care and how training can be prioritised.’

‘Training managers within the local authority, NHS body or NHS Foundation Trust are responsible for ensuring the delivery of autism awareness training. We recognise that they will have strict budgets to work with. It is important to reiterate therefore that autism awareness training can be delivered as part of existing equality and diversity training or similar programmes.’


‘Do you think that this guidance explains the responsibilities that local authorities, NHS bodies and NHS Foundation Trusts have around identification of adults with autism?’

What’s to explain? The responsibilities are wrapped around the words ‘are encouraged’ should consider’ and ‘should review’.

The one positive that I can see, which will not happen unless we do make our presence felt and voices heard at a local level, is this

‘In addition, 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”

What this means for health and social care

• As set out in existing best practice guidance, Directors of Adult Social Services in every local authority should ensure that there is a joint commissioner/senior manager who has in their portfolio a clear commissioning responsibility for adults with autism.
• Local authorities and NHS bodies should consider establishing local autism partnership boards, looking in particular at the example of learning disability partnership boards and the benefits they can deliver for individuals and services.

As a community we are used to fighting hard and to raising our voice to make ourselves heard for every single thing that we need. We should not be doing so again when a few months ago we were celebrating the arrival of the Autism Act. But unless we do respond to this consultation we have no hope of registering our disgust that a community of people who continues to grow daily are being Con-Dem-ned and let down for being in the wrong place at the wrong time. There will come a time when someone will have to take action and stop trying to ignore the ever growing population of people with autism.