ACT NOW Letter via email to Ed Miliband (Leader of the Labour Party)

Dear Mr. Miliband

I am writing on behalf of ACT (Autism Campaigners Together) NOW.  We are a campaign and pressure group and have no political affiliation.  Importantly, we are not a charity and therefore are not constrained by the rules relating to charities when it comes to campaigning.

Our members and supporters overwhelmingly are people affected by Autistic Spectrum Condition (ASC) or parents and carers of children and adults with ASC.  We are on the frontline 24/7 and collectively have a pre-eminent knowledge and understanding of the practical issues those with ASC or their parents and carers face.

ACT NOW was born in July 2010 from concerns regarding the anticipated cuts in the Comprehensive Spending Review. An Impact Assessment Report was published by ACT NOW in October 2010 (report attached) based on 2,943 pieces of evidence received from parents, carers and adults with autism. We currently have over 7,500 named supporters for the ACT NOW Campaign and our number of supporters is growing daily.

We understand that the Labour Party wishes to re-connect with people.  ACT NOW is a frontline group who is connected to its supporters at grass roots level. While we do not provide any direct services we are the genuine voice of those in our communities disadvantaged through autism.

We are asking you to enter into a dialogue with us, not only in respect of our current concerns about the actions of the present government (and it has to be said the previous Labour administration), but also in the formulation of the Labour Party’s policies for the future.

Our current concerns include:

·         That there continues to be a frightening lack of understanding and expertise about autism spectrum conditions and how they impact on the lives of those with the condition and their families.

·         The unsatisfactory Autism Strategy and the inadequate, woolly Statutory Guidance for local authorities and NHS organisations published by the Department of Health in December 2010

·         The cuts being implemented by local authorities across a range of services which are impacting severely on the health and well-being of people affected by ASC and their families.

·         The process surrounding Work Capability Assessment (WCA) and Employment & Support Allowance (ESA). We have clear evidence that those making the assessments have little understanding of autism and the impact autism has on the ability to hold down a job. We are aware in one area alone 11 adults with Aspergers Syndrome have all been declared fit for work after being assessed by an ATOS professional.

·         Plans to withdraw Legal Aid for individuals wishing to appeal to Tribunals or the Upper Tribunal.

·         Lack of representation as a group of people with a complex disability. We are aware that there are no autism specific groups or charities working collaboratively with the Department for Work and Pensions who are currently consulting regarding the abolishment of Disability Living Allowance which will be replaced by Personal Independent Payment. 

Many of our supporters are literally sick with worry and foreboding at what the future holds for them. 

We hope the Labour Party shares our concerns and are willing to work with us to ensure a better life for those our organisation has been formed to support. We would like to meet with you and/or your Ministers so that we can enter into an open and meaningful dialogue with you and your party.

Yours sincerely

Carole Rutherford

Campaign Manager

For & On Behalf of ACT NOW (Autism Campaigners Together)

Area Coordinator Role

The ACT NOW Campaign has now entered its second phase. The founder members of ACT NOW are hoping to be able to work hand in hand with our supporters, so that together we can make sure that we record a comprehensive list of the cuts to support, services and provision in as many areas of England, Scotland and Wales as we can. By recording how the cuts are impacting on families and adults living with autism we will be able to publish a report proving that some of the most vulnerable people in the UK are being affected by the budget cuts to Local Authorities, Primary Care Trusts, Children’s Services, Area Health Authorities as well as the cuts to benefits.

ACT NOW need volunteer coordinators to record the cuts in their areas. We are defining an area by the County Council, Local Authority, Primary Care Trust, Children’s Services and Area Health Authority from whom you receive, or could receive services, support and provision, if you were eligible.

In addition to this we would record any cuts that impact on further and higher education establishments, supported housing/employment etc. We would like if possible to cover and record the cuts across the public, private and voluntary sectors. The more information we can share with each other the more we will know just how much the cuts are going to impact on our lives.

We realise that this looks as if it will involve a great deal of work but the more area coordinators we have the easier the job will become. Any letters that we might ask our coordinators to send to the Local Authorities etc will be written and available to download on our website.

We will help our Area Coordinator to make contact with local support groups both where they live and on-line. This will enable us to find out firsthand how and where the cuts are impacting within the autism community.

What we are NOT asking anyone do to is to snoop or name names. We do not want the names of any of the families in your area who have lost services, provision or support who have been affected by the cuts. We simply want to know the services, provisions and support that have been lost in your area and what those cuts are. We are NOT trying to alienate Local Authorities etc or be in any way vexatious, we simply want to know how the cuts to their budgets have impacted on the services that they offer.

If you are interested in working with us and becoming an ACT NOW Area Coordinator please contact us here or via email act.now@btinternet.com.  Please also contact us if you have any questions that you would like to ask about the role of an ACT NOW Area Coordinator.

Carole Rutherford - Campaign Manager

Will the evidence come too late for those of us living with autism and disability?

The Treasury published an ‘Overview of the impact of Spending Review 2010 on equalities’ on October 20th the same day that the second round of cuts were announced and disability even comes last on this list.  I am not sure that I am happy with the way some of this overview is worded. Then again maybe I am just being overly sensitive. I have made some observations on the review and my thoughts.

The 2010 Spending Review

http://cdn.hm-treasury.gov.uk/sr2010_equalities.pdf

1.4  The Spending Review makes choices. Particular focus has been given to reducing welfare costs and wasteful spending.  This has enabled the Coalition Government to prioritise the NHS, schools, early years provision and the capital investments that support long-term economic growth, setting the country on a new path towards long-term prosperity and fairness.’  

Ouch! Whilst this does not directly state that welfare costs actually constitute ‘wasteful spending’ could the implication here be that welfare costs ARE ‘wasteful spending’?  People with disabilities have not asked to be disabled and is it entirely fair to punish them because they are disabled?

1.8  For tax and welfare measures, a screening exercise was undertaken to assess whether the change would have a particular impact on women or men, people of different ethnic origin or people with disabilities. The results of these screening exercises, and the ways in which these could be mitigated, were considered when policy decisions were taken. Full impact assessments will be considered and published by the relevant departments in due course, as the full details of these policies are worked out.

Approach
1.11  Spending which directly promotes equality of opportunity, such as that on education, is more significant for future life chances than spending which funds other services, even if these are consumed unevenly across the population.

The education of children with autism and special educational needs leaves a great deal to be desired. It has been declared ‘not fit for purpose’ on more than one occasion by the Government’s Educational and Skills Select Committee and Sir Al Aynsely Green, who was at the time the Children’s Commissioner for England. Brian Lamb’s review only last year commented on the lack of attainment by children with SEN which would suggest that life chances for that group of children are not great.

People with Disabilities
2.15 People with disabilities use some public services more than people without a disability, in particular:

• Health: People with long-term health conditions account for around 70 per cent of the NHS budget. Many within this group will also have a disability
• Social care: people with disabilities are more likely to be users of social care
• Service targeted on people on low incomes: people with disabilities are more likely than average to be in households on low incomes; and
• The Disabled Facilities Grant.

2.16 Decisions have been taken within the Spending Review which relatively protect these services. Health spending has been protected in real terms. In social care, the Spending Review has provided additional funding needed to maintain current levels of care, which when combined with efficiency savings, will allow local authorities to ensure that better outcomes are delivered and that greater value for money is achieved. Decisions on funding for social care are, however, ultimately a matter for local government. The Disabled Facilities Grant has been prioritised within the capital allocation process.

There are often no healthcare services available for adults with autism and therapies and interventions are already a postcode lottery for children with autism.  So what will be protected for us in 'real terms'?

While maintaining the current levels of care (which will remain to be seen) in social care is good news for those who have been able to access social care, what does that mean for anyone who has not been able to access it? Leaving it to local government does not inspire me to think that everything will be just fine.

2.17 Measures targeted on people on low incomes, in particular the extension of childcare to disadvantaged two year olds and the Pupil Premium will benefit young people with disabilities, who are over-represented in the target groups for these policies. The confirmed increase in funding for short breaks for disabled children will also help to improve the quality of life for children and young people with disabilities and their families.

2.18  In order to protect these areas, savings have needed to be made in other areas of Government spending. Some people with a disability will be affected by the time limit for contributory Employment and Support Allowance (ESA). However, this will be mitigated for the most severely disabled and those on low incomes as the Support Group in ESA and Income Related ESA will not be subject to the time limit.

(Mitigate - to make something less harsh or severe).  Who will decide who are the most severely disabled? If someone who needs 24/7 round the clock care after being paralyzed by a car accident is assessed as being fit for work, then it is difficult to imagine what severely disabled will be decided as.

Equality and Human Rights Commission 

http://www.equalityhumanrights.com/uploaded_files/eiaguidance.pdf

Section 2 What is an Equality Impact Assessment?
Carrying out an EIA involves systematically assessing the likely (or actual) effects of policies on people in respect of disability, gender and racial equality, and, where authorities choose, wider equality areas.This includes looking for opportunities to promote equality that have previously been missed or could be better used, as well as negative or adverse impacts that can be removed or mitigated, where possible. If any negative or adverse impacts amount to unlawful discrimination, they must be removed.

An EIA has four possible outcomes (examples can be found in Section 4). More than one may apply to a single policy:

Outcome 1: No major change: the EIA demonstrates the policy is robust and there is no potential for discrimination or adverse impact. All opportunities to promote equality have been taken.

Outcome 2: Adjust the policy: the EIA identifies potential problems or missed opportunities. Adjust the policy to remove barriers or better promote equality.

Outcome 3: Continue the policy: the EIA identifies the potential for adverse impact or missed opportunities to promote equality. Clearly set out the justifications for continuing with it. The justification should be included in the EIA and must be in line with the duty to have due regard. For the most important relevant policies, compelling reasons will be needed.

Outcome 4: Stop and remove the policy: the policy shows actual or potential unlawful discrimination. It must be stopped and removed or changed (the codes of practice and guidance on each of the public sector duties on the Commission’s website provide information about what constitutes unlawful discrimination).

Why impact assess?
The simple answer is that for many it is a legal requirement. But more importantly, it is an effective way of improving policy development and service delivery, making sure that organisations consider the needs of their communities, identify potential steps to promote equality and don’t discriminate. It enables evidence-based policymaking, which is at the core of modern public policy, and can allow efficiency savings through more effective services.

Evidence-based policymaking 

Modern public services should be shaped by evidence-based policymaking. This means using evidence to design policy that we know, or at least have strong objective reasons to believe, will work. Without evidence, it can be impossible to tell if good intentions will turn into good outcomes. EIAs provide a clear and structured way to collect, assess and put forward such evidence.

 ‘should’ be shaped by evidence based policymaking?

The evidence that the cuts to budgets that will impact on our services, provisions and support and the benefit assessments and their outcome for adults with autism will only become obvious during the coming months and years.  For many families and adults living with autism the evidence will come too late to stop them from reaching crisis point.  

ACT NOW will continue to campaign for the Government to find the evidence before many more families and adults with autism find life any harder than they already do.

Written by Carole Rutherford, Campaign Manager