Please ACT NOW and make important changes for Autism!

Our Campaign Manager, Carole Rutherford, recently attended a North East Autism Consortium where some of the important changes that will be taking place during the next two years were outlined. These changes include the implementation of the Autism Strategy, the change over from PCT to GP Consortia, the importance of local Joint Strategic Needs Assessment (JSNA) and Health and Wellbeing Boards. 
NOW is the time to start asking questions of our Local Authorities to ensure that we are involved. 



Every Local Authority in England has a JSNA (Joint Strategic Needs Assessment) http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_081097

The JSNA can, or at least should be found on your local council’s website. Some JSNAs have not been updated since 2007 when they first came into being. My own LA reviewed its JSNA in 2009 and autism was not included into the JSNA at that point.

JSNAs are now being reviewed because the transfer of power from the Primary Care Trusts (PCT) to the GP Consortia will of course change the JSNA.

‘The Local Government and Public Involvement in Health Act 2007 requires PCTs and local authorities to produce a Joint Strategic Needs Assessment (JSNA) of the health and wellbeing of their local community.This guidance, which complements the statutory guidance Creating Strong, Safe and Prosperous Communities, provides tools for local partners undertaking JSNA. It describes the stages of the process, including stakeholder involvement, engaging with communities and recommendations on timing and linking with other strategic plans. It also contains guidance on using JSNA to inform local commissioning, publishing and feedback.’

Autism MUST be included within the JSNA otherwise there is no hope of any new services being commissioned for autism, because the JSNA is the tool which is used to inform local commissioning. The JSNA is where data for teens and adults with autism will be collected. Unless the data is correct the services will not meet the needs of adults with autism and will not plan the way ahead for services and provisions.
In some areas data is being collected via GPs.  

The questions to ask of your GP are:-

1. How is autism coded on their system?
2. Have they been asked for data regarding the number of patients they have with a diagnosis of autism?
3. How do they trawl through their records to ensure that everyone who has autism and is one of their patients is included in the data that they are providing?

The JSNA is one of the drivers for the Autism Strategy making it vitally important for parents/carers and adults with autism to find out how they can feed into the JSNA.  Local Authorities MUST consult with stakeholders. Some are doing that right now. Parents, carers and adults with autism need to find out who the stakeholders are and how they can be included.

Although the Autism Strategy in no way reflects the needs of teens and adults with autism it does give us a framework to work with and with a strong local voice it is possible to ‘encourage’ your LA to actually improve on the strategy.

LAs will have a Health and Wellbeing Board. These boards are going to cover every aspect of health and wellbeing (as you would expect) and that includes autism. They are now very much at the forefront of our LAs because of the Health and Social Care Bill currently making its way through the system.

These boards are also going to be involved in the change from PCT to GP Consortia. Parents and Carers need to be finding out NOW how they can be involved and feed into the Health and Wellbeing Boards and also how they can help to shape the GP consortia in their area.

One way to find out what changes are happening now and how you can be involved is though your local LINK (Local Involvement – soon to be Health Watch) network. You can find your local link here http://www.nhs.uk/NHSEngland/links/Pages/links-make-it-happen.aspx
LINK must act if there are a group of people who are keen to be involved with something happening in their area which could affect their health.

Phase Two of ACT NOW

The ACT NOW Campaign is set to continue. We are currently working on an Action Plan and the aims and objectives of the campaign. Our primary concerns continue to be the concerns that underpinned phase one of the ACT NOW campaign.

We are committed to fighting to ensure that both the Employment Support Allowance (ESA) and Disability Living Allowance (DLA) benefit assessments are tailored to meet the needs of adults with autism. That it is recognised by the Department for Work & Pensions (DWP) that adults with autism have impairments with both communication and socialisation and that those impairments will impact on both their verbal and non verbal communication. This includes filling in assessment questionnaires.

We want an assurance that adults with autism will not only be able to access an advocate to assist them in filling in benefit assessment questionnaires but will also be able to accompany them to any medical assessments that might take place. We want an assurance that parents will be allowed to advocate for their adult children. We want an assurance that the DWP medical assessors will be suitably and correctly trained to understand the complexities of autism. We want an assurance that adults with autism will be able to record their medical assessments. We want to know that adults who are not being specifically seen by anyone in the medical profession concerning their autism will be able to access help should they need expert supportive evidence about their condition.

We have opened a new ACT NOW Campaign Page on Facebook and we are asking people to contact us as soon as they are aware that the budget cuts to Local Authorities and Primary Care Trusts are starting to affect them or services and provisions in their area. This is going to be a major part of our campaign but one which we know will take many months of information collecting before we can write another report detailing how the budget cuts are impacting within our community.

We will continue to seek assurances that the demise of Primary Care Trusts which are to be replaced by GP consortia will result in ALL GPs being correctly and appropriately trained to meet the needs of all of the patients who are on the autistic spectrum.

We have already asked for a reassurance that Local Authorities will have to record data and publish accurate records of children who are in their area who have a diagnosis of autism. This is in line with the promise that was made by Phil Hope that it would be the responsibility of Children’s Trusts to ensure that they were aware of and record the numbers of children who have a diagnosis of autism so that they can provide for those children and meet their needs. The new Government has stated that it will no longer be mandatory for Children’s Trusts to publish a Children’s Plan and ACT NOW want an assurance that this Government will ensure that Children’s Trusts will have to commit to officially recording data for children who have a diagnosis of autism.

We have so far personally handed out a copy of the ACT NOW Impact Assessment to:-

David Cameron via No 10 (we have a confirmation letter that Mr. Cameron has received our report)
Paul Burstow MP
Maria Miller Minister for Disabled People
Charlotte Leslie MP Chairperson APPGA
Paul Maynard MP
Lord McKenzie
Theresa May MP
Sara Teather MP
Lord Willis of Knaresborough
Stephen Pound MP
Robert Evans MEP

With reports to the following people being sent out by post:-
Iain Duncan Smith
Lord Ashley of Stoke
Baroness Greengross
Baroness Massey
Baroness Morris of Yardley
Lord Adebowale
Lord Parekh
Lord Puttnam
Lord Bichard Lord Laming
Lord Dholakia
Lord Ouseley
Lord Hattersley
Lord Bassam
Baroness Boothroyd