Thursday, 30 June 2011

Red Tape Challenge

The Government is running the Red Tape Challenge and included the Equalities Act 2010. This was divided into eight main themes where contributers were asked to consider the questions below. 

ACT NOW disagreed the Act should have been included in the Red Tape Challenge at all but here is our submission to each of the eight areas where under each topic we were asked to Tell us what you think should happen to these measures and why, being specific where possible

Should we scrap them altogether?

ACT NOW believes would be disastrous for people with disabilities and society as a whole if this Act were to be scrapped or integrated with areas of existing legislation. Many people and communities worked together to ensure we had an Act that was just and fair and which gives vulnerable people the protection they deserve. The Act was designed to improve quality of life for people with disabilities and should be built upon, not destroyed.

ACT NOW finds it repugnant that the Equalities Act should even be considered as ‘Red Tape’. The Government chose to include this Act in the 'Red Tape Challenge' says a great deal about the lack of commitment toward vulnerable people who are less able than other members of our society. 

The Equalities Act has not had enough time to have a positive impact on the lives of people with disabilities. The Act needs to be adhered to and should be protected. It should certainly not be watered down or diluted, or scrapped. Governments have a duty to protect all citizens from all forms of discrimination. This legislation is needed to protect people who vulnerable and disadvantaged.  
Hubert H Humphery said: "The moral test of Government is how that Government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life, the sick, the needy and the handicapped." 

Asking how the enforcement of the Act can be made less burdensome is sending out a clear message that people with disabilities are a burden to society and the state purse and are not worthy of the protection this Act provides them with.

Could their purpose be achieved in a non-regulatory way (eg through a voluntary code?) How?

A non-regulatory way would not be able to protect the characteristics of the Equalities Act. Any type of voluntary code would simply allow the dilution of the Act and allow for an inconsistent approach. It would also allow different bodies of people to interpret the Act as they felt or deemed appropriate. 

The autism community has suffered for years without the necessary legislation to protect vulnerable children and adults with autism. (Scotland still has no legislated autism strategy) To purport that a voluntary code could take the place of legislation would be a big step backward.  

The autism community lobbied for legislation for years because Governmental guidance and guidelines have failed to provide our community with the measures required to ensure that children and adults with autism were not subject to disability discrimination. The legislation within the Act must be enforced in full and not on voluntary basis. It is wrong to compromise the protection that the Act offers people with disabilities. 

It is a myth that people with disabilities are fully included into our society. Only 15% of adults with autism are in full time and meaningful employment. That is as opposed to 48% of the whole population of people with disabilities. (Labour Force survey, office for national statistics 2008) Adults with autism are being marginalised and discriminated against amongst and compared to other disabled groups. 

Often adults with autism want to work and with the correct level of support can work and yet employers are less likely to employ someone with autism as it is an often misunderstood hidden disability. The low employment figures cannot be attributed to a lack of desire to work, and demonstrate that it is considerably more difficult for an adult with autism than an adult with another disability to secure full time, permanent employment. 

There are a number of key challenges that prevent people with autism from accessing work. These range from a lack of appropriate skills due to problems in accessing education and training (including social skills and work skills training) to the failure of employers to understand and make reasonable adjustments (both during the recruitment process and in the workplace) and a lack of appropriate support for people with autism to find and sustain employment. 

A lack of understanding that autism is a spectrum condition can lead to inappropriate, stereotypical or narrow responses and active discrimination. Adults with autism have told us about employment advisers who had recommended only certain types of jobs to them, social workers who had assumed that all people with autism have a learning disability and others who had simply directed all adults with autism to Aspergers syndrome support groups. These are all active forms of positive discrimination by people and examples of adults with autism being made to fit into society in a way that some professionals believe they must.This is why the Equalities Act is vitally important to anyone who has an autistic spectrum condition.

Could they be reformed, simplified or merged? How? 

The Equality Act 2010 is the coming together of past equalities legislation, such as the Race Relations (Amendment) Act 2000 (RR(A)A) and Disability Discrimination Act 2005 (DDA). The Act was developed after in-depth and extensive consultation with key partners from business and a wide range of communities. 

The provisions within the Act have been developed for all members of a civil society and provide rights and protection from discrimination. The Equality Act 2010 should not be reformed, simplified or merged. If we want a fair and equal society, then we need to enshrine that right in law.  

The Act is necessary as a stand-alone piece of legislation because it sends out a clear message to every sector in society that it is unlawful to discriminate against vulnerable people and that those people are protected by judiciary. The Government should seek to strengthen the Act.

The Act gives a promise and offers hope to people with disabilities that they will be treated fairly and that reasonable adjustments will be made to enable them to be fully included into all aspects of life. This includes employment, social activities, housing and choice and control. Denying people with disabilities the life chances that others take for granted must be not be tolerated. 

Can we reduce their bureaucracy through better implementation? How?

Bureaucracy will be reduced when a clear and concise message is sent out to every member of our society that discrimination will not be tolerated in law given the weight of the Equalities Act. This will help to ensure that attitudes and behaviour towards people with disabilities begin to change.

Can we make their enforcement less burdensome? How?

ACT NOW find this particular question extremely distasteful. There are many thousands of people in our society who live with disability every day with no hope of being able to make their disability less burdensome.
How something can be deemed ‘burdensome’ when vulnerable people are leading difficult lives every day is quite incomprehensible. Some people with disabilities are struggling to even exist, many are ignored or ineligible for support. 

We believe that the Government have a duty of care to vulnerable members of society who are often unable to protect themselves. We should be 100% certain that our Government has stepped up to the mark to offer these people the best possible protection.

People with disabilities are excluded from job opportunities. They are often made to 'fit in' rather than reasonable adjustments being made which would enable and not disable that person. The correct reasonable adjustment could improve life chances and socio economic stability. People with disabilities are often hidden within our communities, often ignored or bullied by other members of their communities. They face disadvantage and discrimination and this can lead to health and social inequalities, education and criminal justice inequalities. 

Public authorities, employers and communities must be transparent and accountable for their actions. Far from being seen as burdensome, the enforcement of the Act is crucial in establishing a fully engaged civic society. Equal rights are not a burden. We have to stop going through the motions of including people with disabilities and turn it into a reality. By constantly offering employers, housing associations, public venues, activities, buildings even voluntary organizations a clause that enables them to actively discriminate against people with disabilities, we show a total lack of respect for anyone who is living with disability.

People with disabilities have a great deal to offer society if they were actually treated as equals and not second rate citizens who it is acceptable for employers and businesses to sideline and push to one side.

Should they be left as they are?

Given the Equalities Act was developed by extensive working across government departments, with cross-party support and with significant input from a diverse range of communities and businesses, any dilution of the Act will regressive for any member of our society who has a disability.

The Equalities Act is absolutely essential if we want a commitment to equality and fairness to be reflected across the spectrum of society. ACT NOW would like to see this Act strengthened and enforced in full. It is morally wrong for any Government to consider people with disabilities as burdensome or to place the Equalities Act in its ‘Red Tape Challenge.’

Saturday, 18 June 2011

ACT NOW supports ACE - new Facebook page

We have set up a new Facebook page because ACE (The Advisory Centre for Education, England) has lost funding, please like the page and share with your friends - this is the situation:

ACE’s Department for Education (DfE) Helpline Grant funding ends on 30th June 2011, which will mean much of the free advice service, will have to close.

The Government has repeatedly said that it wants to protect the vulnerable and yet by cutting the funding to ACE and therefore services that ACE offers, it is set to hurt and impact on some of the most vulnerable families right across the special needs spectrum.

Any reduction to a service that is tried and tested and is working well for parents who have children with special needs can only hurt who needs that service most. If it’s not broken then why fix it?

ACE was named in the proposals to reform Legal Aid in England and Wales as a source of expert free advice for parents. And yet the Government have decided to cease funding this service. The first cut to disempowerment is always the deepest and unless we stand together to support ACE the knife will continue to cut away at our services.

Important Note: Advice will reduce to a minimal service (with an increase in digital approaches) but the other elements of ACE; training, membership publications etc, will continue.

BY LIKING THIS PAGE YOU ARE SUPPORTING the letter we are going to send to Sarah Teather MP to discuss all of the above concerns. We will be explaining how disempowering this will be for parents of all children with additional support needs but particularly for those with children who have ASD's.

Please invite your friends; we need to make sure Sarah Teather knows how important and valued ACE is as a service. ACE has been running for 50 years and now seems to be a victim of its own success. Power is being taken away from parents with this vicious cut in funding to an as yet unproven service.

Key Message’s:

1) There is unprecedented change in the educational landscape, which parents and families will find incomprehensible (Education Bill, SEN Green Paper and Admissions code)
2) Short time scale has placed at risk the continued provision of the high quality advice services that ACE provides to parents and carers.
3) No organisation has been commissioned to date to progress this area of work.
4) Web based solutions is one method to assist parents and families, but many families from disadvantaged and vulnerable communities want and need somebody to talk through their complex situation.
5) ACE’S expertise enables them to give advice of the highest quality on complex and challenging issues that otherwise would result in social exclusion.
6) The Department for Education (DfE) acknowledges that ACE is the expert in our field.
7) Guidance to schools and Local Authorities on the exclusion of pupils from schools and pupil referral units, names ACE as the first stop for parents when their child is excluded from school.
8) ACE was named in the proposals to reform Legal Aid in England and Wales as a source of expert free advice for parents.
9) Many Local Authorities, charities and professional networks know of our expertise and direct parents and families to us for help.


Tuesday, 14 June 2011

During the Welfare Reform Bill's third reading we wanted to remind all MP's about our concerns and the concerns of our supporters.

We at ACT NOW (Autism Campaigners Together) and our 10,000 supporters have many concerns about the migration from Incapacity Benefit to Employment Support Allowance including the Work Capability Assessment. Concerns we and our supporters believe all MPs must be aware of.

The evidence given by Atos Professionals and Professor Harrington to the DWP Select Committee is one area we want to discuss:

Atos made it clear that the Work Capability Assessment is not looking at specified conditions, assessors are not looking at any diagnosis that a client may have, they are assessing their functionality. One of the Atos professionals at committee said:

‘We are training people in the art of interviewing people. We are not diagnosing conditions we are there to see the way in which a group of conditions impact on someone’s ability to function.’

Autism is a pervasive developmental disorder, the dictionary definition of pervasive is ‘all-encompassing’ ‘enveloping’ ‘invasive’ ‘persistent’ ‘omnipresent’ ‘insidious.’ Autism as a pervasive disorder therefore impacts on the functionality of the person with the condition. Autism is a unique condition which requires a great deal of specialist knowledge to enable any professional to accurately assess the impact that the condition is having on the person.
The Atos professional continued:

‘The key skills that we need to have are communication, comprehension, the ability to be able to evaluate perhaps a lack of cognitive function in someone with potentially an autistic spectrum disorder so the evaluation is not about the skills of someone’s diagnosis but the skills about being able to assess and reflect someone’s mental cognitive or behavioural function.’

Are we now to understand that all Atos assessors have been specifically trained to effectively communicate with adults with autism?

There is no ‘one size fits all’ template for autism and this extends to communicating with adults with autism. Autism impacts on both the receptive and expressive language of the person with the condition, although the degree of impairment will differ in every individual. If an adult is having problems processing questions that they are being asked they may ignore the person who is asking the questions, have an emotional outburst or even stand up and leave the room so that they can escape.

Unless the person conducting the interview has autism specific communication skills enabling them to effectively communicate with the adult they are interviewing the probability is that effective communication will not take place.

The Atos professional also commented on the usefulness of the mental health champions now in place. While addressing a question that was asked about autism they stated:

‘I think that you are right to say the mental health champions will be a support in that one of the things that I am keen to see is how as we evolve through the period of the mental health champions, and that they are used potentially in a more pro-active way with a desire to learn more and more in the terms of someone wanting to run past a specific case with them.’

There are huge concerns being raised by some of our leading professionals working with people with autism across the UK that mental health professionals generally receive very little, if any, training specifically wrapped around the mental health issues associated with autism. This was an area of concern that was flagged up with the Department of Health when they were collecting information before writing the Adults Autism Strategy. How can we be sure that the mental health champions have received autism specific training so that they are able to provide support for an assessor who needs to discuss a specific issue that they might have after assessing an adult with autism?

So often there is a lack of understanding, support, provision and services for adults with autism resulting in those adults suffering mental health problems. Without a good overall understanding of autism it will be impossible to assess. It is imperative that MPs understand that although Atos assessors are looking at the functionality of a person, autism is a complex condition that often takes several years to diagnose. Therefore the person who is making an assessment of functionality must possess a good knowledge of the condition.

We have numerous other concerns regarding the Welfare Reform Bill especially the migration from Employment Support Allowance and the Work Capability Assessment.

Here is a summary:

It must be recognised that anyone who has a Autistic Spectrum Condition has an impairment in communication.

The literature provided by Jobcentre Plus for adults with additional support and communication needs does not include anyone who has a diagnosis of autism therefore having a diagnosed communication impairment.

We have evidence that reasonable adjustments are not being made for some adults with autism. The failure to do so is impacting on the mental health of these adults.

The process of communicating with adults with autism is seriously flawed and no reasonable adjustments are being made to enable adults with autism to communicate effectively throughout the process.

No support in the form of an advocate or communicator is being offered at the first point of contact by JobCentre Plus.

The Work Capability Assessment descriptors do not reflect the complex nature of autism.

Adults with autism are being inappropriately subjected to an assessment using a method of assessment that does not allow the complexity of autism to be accurately assessed.

Parents and carers are not being allowed to help their adult children communicate during their assessment.

The proposed changes to the descriptors will have a detrimental impact on people with an autistic spectrum condition.

It must be recognised that many adults with autism have been failed throughout their childhood by both education and health impacting on their ability to seek and maintain employment.

Adults who have been cast adrift without provision and services since leaving Children’s Services will have no supportive evidence to produce if they are asked to provide supportive evidence.

Assessment Centers are not meeting the sensory needs of adults with autism.

The self directed distance learning autism training received by the Atos assessors is woefully inadequate. The module is wrapped around Learning Difficulties and Autism. Not everyone who has autism will have a learning disability but everyone will have impaired communication skills.

Adults with autism will only feel confident with the assessment process when the method of assessment reflects their complex, specific and individual needs.

The DWP does not inform adults about the emergency rate which can be accessed if adult finds themselves in an appeal situation which we believe is neglectful.

The national roll-out for the migration process is we believe premature.

The morality of the bill is in question as we have summarised above, as are the methods practised by Jobcentre Plus and Atos. Aside from the impact on the people accessing the welfare system there are those who care for them and the impact welfare reform will have on them. There are an estimated 6 million carers across the UK saving the economy billions in care costs. Those caring for an adult child with autism are telling us daily that they are literally terrified about the changes to IB and DLA and the impact it will have on their lives and the people they love and care for. They are also right now living with cuts at LA level whilst living in fear, isolation and often poverty with little or no respite or support.

We hope all MP's will consider the concerns of the autism community  when the Welfare Reform Bill is read in Parliament again this week.

Yours sincerely

ACT NOW (Autism Campaigners Together) 

Monday, 13 June 2011

Carers Week 2011

ACT NOW (Autism Campaigners Together) is lobbying hard to ensure the voice of the autism community across the UK is heard by those in power during these difficult times. ACT NOW are lobbying hard for carers too as welfare reform and cuts to service provision is having a terrible impact on carers. Carers are often living close to breaking point, with very little sleep and often in poverty. Many are anxious and living in fear of looming changes and cuts, particularly the change to ESA and the WCA.

"Never doubt that small group of thoughtful, committed citizens can change the world; indeed it's the only thing that ever has." Margaret Mead

There are 6 million carers across the UK, saving the economy billions in care costs. Many are caring for someone whilst trying to maintain a job away from their caring duties - we talk to people every day who find day to day life a frustrating struggle which results in them feeling isolated and depressed. We want the people in power to sit up and really listen.

Check out the Carers Week website for information about events and support in your area or follow them on Twitter all this week.

ACT NOW will keep MARCHING ON for Carers!


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