ACT NOW Autism Campaigners Together are a core group of people passionate about the future and wellbeing of children and adults with an Autistic Spectrum Condition in the UK. The vast majority of the ACT NOW core group live with autism 24/7.
As well as the core group ACT NOW has co-ordinators who cover 13 regional areas in the UK including Scotland, Wales, and Northern Ireland. We have active supporters on all of our groups, who with the help of other supporters of the campaign are recording the cuts to services and provisions as they are announced. We are also receiving information through our groups about the benefit assessments that adults with autism are having.
We currently have over 8,000 named supporters for our campaign and the number continues to grow on a daily basis. ACT NOW has the support of 25 autism groups and organisations who all support families living with autism and adults with autism here in the UK.
The ACT NOW Consultation Response to the Disability Living Allowance Reform has been produced following consultation with our supporters.
1. What are the problems or barriers that prevent disabled people participating in society and leading independent, full and active lives.
Despite ‘inclusion’ being a buzz word in the UK since 1997 it is a word that continues to lack any real depth of meaning for those who are living with disability. ‘Inclusion’ has nevertheless been latched onto by the public in general, who have been persuaded to believe that we live in a fully ‘inclusive’ society and that children and adults with disabilities are now very well taken care of. This in itself has become a barrier for disabled people many of whom continue to find it very difficult to participate in society.
This is especially so for those who have hidden disabilities. Autism and Aspergers Syndrome can often be a hidden disability. People find it harder to accept, and make reasonable adjustments for someone who has a disability that can not be seen. Even if adjustments are made for that person because the disability is hidden the person who is making the adjustments often expects that the disabled person will, after a period of time, be able to present themselves in what society generally considers to be a ‘normal’ way.
Attitudes continue to be one of the biggest barriers for people with autism to overcome. There is a dearth of understanding about autism which has been recognised in the Adult Autism Strategy ‘Fulfilling and Rewarding Lives’ which is why the Government is providing £250,000 to ensure that frontline professionals and staff have received ‘some’ autism specific training. If we have frontline professionals and staff who lack any depth of knowledge and understanding about autism then it is highly likely that the lack of understanding and awareness of autism is evenly spread throughout our society.
There are stereotypical attitudes towards people with disabilities which can be hard to overcome and this can result in discrimination, patronizing, ignorance and bullying of the person who is disabled. People with disabilities can be socially ostracized leaving them feeling alone, isolated and vulnerable.
People with disabilities are often stigmatised because of their disability and adults with autism find it extremely difficult to seek and maintain employment. Only 15% of adults with autism are currently in full time employment. However even though many adults with autism would like to work there are barriers which are preventing them from doing so.
Autism is a condition that is diagnosed because of a severe impairment in communication and socalisation, and yet we continue to deny our children and adults an education which would teach them to communicate and socalise effectively, something that is essential if these adults are ever going to be able to seek and maintain employment. Effective communication and social skills need to be added to the curriculum of every child with autism if we want the current situation regarding the employment of adults with autism to change.
Support in the workplace for adults with autism ranges from being poor to none existent. As autism is a lifelong condition all children and adults with autism will require lifelong support.
Being able to live as independently as possible is something which we as a society should be striving for. Being able to live as independently as possible is even more important than seeking and maintaining employment. To enable adults with autism to live as independently as possible it is essential that as children, the services, therapies, interventions and provisions that are essential to work towards independence are readily available. Children and adults with autism often have to fight, sometimes for many years, for the essential support and care that they require. The bar to access services is often raised too high and there is too much "red tape/form filling" necessary before Local Authorities and Health and Social Care Providers will even consider providing a service.
Children and adults with autism can have problems accessing transport to get to where they need to be. There needs to be more disabled parking bays as negotiating a busy car park can present someone with autism with a sensory overload.
Disabled people are always on the outside looking into society. Society needs to be more accepting of people who are “different” and be prepared to integrate disabled people into normal life and not consider them a nuisance or too much trouble to deal with.
2. Is there anything else about Disability Living Allowance (DLA) that should stay the same?
ACT NOW believes that it would be a mistake to take away the mobility component of DLA for those people in care homes. The government is mistaken in believing that people in care homes get transported about free of charge (they do not). Like everyone else people who live in care homes and residential want be able to access the outside world, see friends, go shopping, have outings and generally be as independent as possible. This is especially important for someone with an Autistic Spectrum Condition who needs to practice their social skills in a variety of setting because people with autism find it difficult to transfer their skills from one setting to another.
ACT NOW finds it difficult to believe how taking away the mobility component from a disabled person who clearly has mobility issues can enable that person to continue to do these things? Our concern is that when the money is removed, people in care homes will just have to stay in and look at four walls and this will lead to depression and feelings of isolation, frustration and impact on the emotional wellbeing of that person.
ACT NOW believes that Disability Living Allowance should remain the same for anyone who has a recognised and diagnosed lifelong condition and who has been awarded DLA for life or for an indefinite period. We also believe that any new system should not prevent people with lifelong conditions from being awarded DLA for life or an indefinite period. It must be recognised and accepted that some conditions, including autism, will always greatly impact on the lives of those with the condition, making it necessary for that person to have additional support. Reassessing people with lifelong conditions will not be in our opinion a cost effective option for the Department for Work and Pensions.
Reassessing someone with a lifelong condition like autism is we believe morally wrong because it is asking someone with a lifelong disability to justify their diagnosis and how the condition impacts on their lives.
3. What are the main extra costs that disabled people face?
There are many extra, often hidden costs, of living with autism. Many children and adults can not access the therapies, interventions, services and provisions which they require to improve their quality of life. Even those who can access these provisions often only have the therapy, intervention, service or provision for a limited amount of time. There is now well documented evidence which states that people with autism will require these things for life, because children and adults with autism often lose skills that they have gained if they are not continually worked on or supported.
Some children and adults with autism require a ‘safe space’ which can be built into their home which they need to use when they are overloaded and can no longer cope because of stress and anxiety. Some children and adults benefit from having a specially adapted sensory room in their homes. Both of these adaptations are very costly.
Many parents, carers and adults with autism pay for their own support. Extra costs can range from having someone do the shopping, cleaning and cooking, all things that adults with autism can find difficult. People with autism sometimes find it impossible to go out alone so a carer is needed to help the disabled person access the outside world. In addition to this some adults with autism can not be left on their own, so a live-in carer is needed, or someone to be on call at night.
Adults with autism often have co-morbidities running alongside their autism. It is now recognised that sensory issues play a huge part in autism and adapting the environment to ensure that sensory impairments are kept to a minimum can be very costly.
Attention Deficit Hyperactivity Disorder (ADHD) is perhaps the most common co-morbidity known to go hand in hand with autism. Adults with ADHD can act impulsively often without any regard to their own personal safety. This means that is it essential that there is always someone on hand to ensure that the adult remains safe. Dyspraxia is a co-morbidity of autism. Adults affected can suffer from both fine and gross motor issues. This can result in furniture being broken on a regular basis. Many families have reported to ACT NOW that they buy beds much more frequently than other families would ever expect to buy beds. Obsessive Compulsive Disorder (OCD) is a co-morbidity with autism and this can result in the adult having to undertake often costly routines and rituals.
Fine motor skill issues mean that children and adults with autism can find it not only difficult but painful to write. This means that the easiest way for someone with autism to communicate is through a PC or laptop. These are both very costly items. It is also sometimes necessary to have a specially adapted keyboard or mouse to help the child or adult to use the PC or laptop.
Sensory issues affect not only the clothes and shoes that children and adults with autism can wear but also the type of bedding that they can use. Sensory issues can also dictate the type of bed that the person with autism can sleep in, cups they can drink from and the plates that they can eat from and the food which they eat.
4. The new benefit will have two rates for each component: Will having two rates per component make the benefit easier to understand and administer, while ensuring appropriate levels of support?
It is difficult to answer this question without knowing how the two rates for each component will be decided. If the rate is going to be decided via assessment, written and/or by medical or interview, then the adult who is being assessed must be made an offer of an advocate/communicator at the first point of contact. All adults with autism have impaired communication and socialisation skills. This impairment applies to all areas of their lives including filling in forms about themselves. Who will be carrying out any assessment that is deemed to be necessary? Will this person who is carrying out the assessments be correctly and specifically trained and qualified to understand autism, which is a vast spectrum with no two people presenting in the same way.
What, if any, disadvantages or problems could having two rates per component cause?
If the assessments are not carried out by people with the required knowledge, experience and understanding of autism ACT NOW believe that this could result in an increase in the number of appeals and tribunals.
5. Should some health conditions or impairments mean an automatic entitlement to the benefit, or should all claims be based on the needs and circumstances of the individual applying?
ACT NOW feels that in some circumstances automatic entitlement should apply. We believe that people with complex lifelong conditions should be awarded an automatic entitlement without a constant battle to prove their condition and needs. Some of our supporters suggested a base rate entitlement and that any further entitlements would be based on their needs and circumstances.
6. How do we prioritise support to those people least able to live full and active lives? Which activities are most essential for everyday life?
The most support should be given to enable adults to live an independent life as they possibly can. Adults with autism should be able to enjoy the same quality of life as anyone else would enjoy. This would include the support needed for going out into the community and do basic things like shopping, a visit to the dentist, doctors or hospital appointments, all of which can easily become a traumatic experience for someone with autism. It can be very difficult for people with autism to adapt to change and this includes the people who are caring for them so adults with autism require consistency including those who support them.
Being able to participate in every day life activities is essential. We should be actively including adults with autism into our community and supporting them to do all of the things that neurotypicals can do, otherwise because of the rate at which autism is growing we risk greatly increasing the number of adults with autism who are living in isolation in our communities.
7. How can we best ensure that the new assessment appropriately takes account of variable and fluctuating conditions?
It is essential that whoever carries out the new assessment understands the complexities of autism because the level at which an adult with autism is functioning can fluctuate not only from day to day but from hour to hour depending on their levels of stress and anxiety. Any changes to routine, however minor they would appear to be to an untrained assessor, can effectively make it impossible for a person with autism not to function well for the rest of the day. Changes to their environment, their carers, a bus arriving late or not arriving at all, a clock being five minutes fast can all impact on the functioning ability of someone with autism.
Sensory issues also play a big part in an adults ability to function effectively and all 5 senses can either be hypo or hyper sensitive making if very difficult to pinpoint a particular stressor. An adult with autism’s functioning can be affected by a flickering light, a clanking radiator, the smell of someone’s perfume or the colour of someone’s jumper. Whoever assesses adults with autism will have to fully understand how complex autism is.
8. Should the assessment of a disabled person’s ability take into account any aids and adaptations they use? What aids and adaptations should be included?
Should the assessment only take into account aids and adaptations where the person already has them or should we consider those that the person might be eligible for and can easily obtain?
Only adaptations that a person might already have and not any which they might require but have been unable to obtain should be assessed. It is difficult to imagine how an assessment can be made of something that does not exist. An adult with autism would find it very hard to imagine how an aid or adaptation could improve their lives without having first experienced the aid or adaptation, as part of the autism diagnosis is an impairment in imagination.
9. How could we improve the process of applying for the benefit for individuals and make it a more positive experience? For example: How could we make the claim form easier to fill in?
How can we improve information about the new benefit so that people are clear about what it is for and who is likely to qualify?
It must be recognised that adults with autism have a diagnosed impairment in communication and socalisation. We believe that because autism is a condition that is wrapped around communication and socalisation it is essential that all adults with autism are offered support, at the first point of contact, when it is known that an assessment is going to take place.
It is unquestionably the case that adults with autism often find it difficult to fill in the forms that are usually required to be completed prior to assessments. This is because it is not only their verbal communications that are impaired, but also all other forms of communication including written communication.
Given that it is highly likely that adults with autism will be placed at a substantial disadvantage by these assessments, it is vital that everything is done to support a person during the process. It is essential that the relevant public bodies are proactive in offering and supplying independent and meaningful support at the earliest opportunity.
All adults who have a diagnosis of autism who are contacted by the benefit assessor should be given an automatic offer, on the basis of their autism diagnosis, of access to an advocate, supporter or “communication assistant”.
This should apply irrespective of their “apparent” communication abilities. It is essential that their communication difficulties and differences, their communication “styles” and their preferred methods of communication are taken into account and appropriate adjustments made and support ensured. If assistive technology is required then this must be provided before any test takes place.
ACT NOW believes that effective communication is a basic human right and to enable adults with autism to communicate effectively an offer of an advocate/communicator should be made at the first point of contact whoever is undertaking an assessment.
10. What supporting evidence will help provide a clear assessment of ability and who is best placed to provide this?
ACT NOW has some real concerns regarding supporting evidence and who is best placed to provide this. There are many adults with autism who have not been seen by anyone about their autism since leaving Children’s Services. Adults with an IQ of over 70 who do not have a mental health issue continue to fall between the cracks for services and provision. ACT NOW is very concerned as to who will be able to supply supportive evidence for adults who are isolated and hidden within our communities.
Case History
James is 24 years old and has a diagnosis of Aspergers Syndrome and Keratoconus. Although James sees someone regularly about his visual impairment James has seen no one other than his GP in connection with his autism since he was discharged from Children’s Services when he was 16 years old. At the point of discharge James’s family were told that they were ‘managing’ James very well and that it was unlikely that Mental Health Services would have anything that they could offer James.
When James was 16 his DLA was reviewed. The re-assessment form asked who James had seen in the last six months who could verify his condition and how it impacted on his life. James’s mother made an appointment to see their GP with James. The GP felt that because James had not seen anyone in the medical profession since being discharged from Children’s Services when he reached the age of 16, it would be beneficial to James to be seen by someone in connection with his autism. Despite trying not only autism related health professionals in their own Authority the GP contacted autism related professionals throughout their region. No one was willing to see James because his IQ was over 70.
After speaking to the DLA offices James’s mother was told that it would be acceptable for the GP to be named on the DLA form.
When the award was made the rate for care was lowered even though James had developed Keratoconus since his last review. There was a detailed report from a leading eye specialist detailing how the Keratoconus together with the Aspergers Syndrome was greatly impacting on James’s life.
After appealing the decision to lower the care rate for James the original award for care was reinstated and an indefinite award was made. James has to date seen no one in the medical or social care field since his DLA was reassessed and the indefinite award was made.
ACT NOW is aware that there are other adults like James who have not seen anyone in connection with their autism for many years. Who will these adults be able to call on for supportive evidence?
ACT NOW believes that where possible a range of professionals and also a history must be taken into consideration rather than treating the claim as new each time. Autism is a lifelong disability.
11. An important part of the new process is likely to be a face-to-face discussion with a healthcare professional. What benefits or difficulties might this bring?
While the benefits of a face to face discussion would be obvious for someone with a physical disability as it would be seen, the same could not be said for someone with autism as there are often no outward signs of autism, and where there are signs of extreme stress and anxiety they could be mistaken for just that, and not as a way in which someone on the Autistic Spectrum might present most of the time. It is essential for whoever is assessing the adult with autism to have a good knowledge and understanding of autism and to have received suitable and accredited training.
As we have already stated we believe that all adults with autism should be offered the support of an advocate/communicator at the first point of contact regarding an assessment. We consider this not only to be essential where any face to face assessments take place but also prior to the assessment to give the adult with autism time to familiarise themselves with their advocate/communicator and to feel comfortable with them. We believe that parents of adults with autism should be able to act as advocate/communicator for their children if there is no one else who is able to do so.
Are there any circumstances in which it may be inappropriate to require a face-to-face meeting with a healthcare professional – either in an individual’s own home or another location?
We are very am concerned that exposing some adults with autism to a face-to-face interview, wherever they are held they will put that individual at risk. Autism is a complex condition and some individuals with autism also have mental health issues and may become violent when stressed and anxious, either by being in an unfamiliar environment or by meeting a stranger.
Face to face meetings would be difficult for someone with autism with their social and communication difficulties, this should be taken into account and as we have stated the person should be offered an advocate to support them.
12. How should the reviews be carried out? For example: What evidence and/or criteria should be used to set the frequency of reviews?
Should there be different types of review depending on the needs of the individual and their impairment/condition?
Autism is a lifelong condition. It is also a complex condition that requires someone with a great deal of expertise who can understand how the condition can impact differently on individuals with the condition.
ACT NOW believes that there must be a very different type of assessment process for adults on the autistic spectrum, and one which takes into consideration their often complex and specific needs. The assessment will have to wrap around the individual with autism as opposed to the adult having to fit in with the assessment procedure. The assessment must also take into account the communication and socalisation impairments that all adults with autism have irrespective of how they appear to be able to communicate.
It would therefore make sense if someone who knows the adult with autism well and who sees them on a regular basis should be contacted at the point when a review might be required, to ask if there have been any changes in the adult’s condition and how it is affecting them and impacting on their lives. The frequency of the reviews should depend on any changes that have occurred and how these changes have impacted on the adult.
13. The system for Personal Independence Payment will be easier for individuals to understand, so we expect people to be able to identify and report changes in their needs. However, we know that some people do not currently keep the Department informed. How can we encourage people to report changes in circumstances?
Adults with Autistic Spectrum Conditions infrequently represent how their disability impacts on them accurately and to ask an adult with autism to be able to identify and be responsible for notifying any changes in their condition could be for many adults with autism problematic.
ACT NOW is concerned by the statement that ‘Personal Independence Payments will be easier for individuals to understand’. Autism is primarily a condition that affects communication and socialisation and it is for that reason that ACT NOW is currently campaigning for advocate/communicators for every adult with a diagnosis of autism who is having a benefit review.
We find it difficult to see how someone with an autistic spectrum condition can be encouraged to report changes in their circumstances which they might not fully understand, or may even be unaware of themselves. For this reason it may be prudent to pass the responsibility of notifying changes in a person with autism’s condition to their lead healthcare professional, whoever that may be.
14. What types of advice and information are people applying for Personal Independence Payment likely to need and would it be helpful to provide this as part of the benefit claiming process?
People with autism will require information that they are able to understand and this may require them being able to access an advocate/communicator to familiarize them with the process and to help them to understand how they can apply for this benefit and how they will prepare a claim.
15. Could some form of requirement to access advice and support, where appropriate, help encourage the minority of claimants who might otherwise not take action? If so, what would be the key features of such a system, and what would need to be avoided?
An unconditional offer of an independent advocate/communicator at the point of diagnosis would be beneficial for adults with autism and also an unconditional offer of an independent advocate/communicator if the adult has been assessed for support from a social care or community care provider.
16. How do disabled people currently fund their aids and adaptations? Should there be an option to use Personal Independence Payment to meet a one-off cost?
Some of the aids that are required by adults with autism are not material aids. Some adults pay to access therapies and interventions that are helpful to them that are currently not available to them via the National Health Service. It has been proven that Occupational Therapy is not just beneficial for children with autism but can also be beneficial for adults with autism. Some adults pay to access social skills groups. Both of these therapies are ongoing. Paying for a 12 week course of any therapy or intervention will never be enough for adults with autism because they have to continually practice some of the skills that they have learnt to be able to use them effectively in social settings.
17. What are the key differences that we should take into account when assessing children?
The vast majority of children with autism will be seen on a regular basis by at least one of the following people; health professionals, speech therapists, educational psychologists, specialist teachers, occupational therapists, physiotherapists who will have a good understanding of that child. ACT NOW does not support the idea of assessing children with autism at all.
If confirmation regarding the impact that the autism has on a child’s life is necessary it should be sought via the professionals who are involved in the child’s life.
Children with autism often find everyday living very stressful and suffer greatly from anxiety. Meeting strange people who they do not know well in unfamiliar places would be very problematic for many children with autism. Some children with autism find it extremely difficult to respond to some professionals, for example speech and language therapists, who they see on a regular basis at school, but who in a home setting they can find it difficult to communicate with and respond to.
For this reason ACT NOW believes that assessments for children with autism could be very damaging and could impact negatively on the emotional wellbeing of the child. We also believe that some parents may decide not to subject their children to this ordeal and may then be unable to provide the therapies and interventions that they use the DLA to fund.
18. How important or useful has DLA been at getting disabled people access to other services or entitlements? Are there things we can do to improve these passporting arrangements?
As with everything else connected to autism being able to access additional services or entitlements because of DLA is something of a postcode lottery. In some areas the high rate care component will allow an adult with autism to access additional service or entitlements while in other areas the adults will still fail to meet the criteria for these additions. However as there are still a dearth of services for adults with autism in the United Kingdom, for many DLA has made no difference at all to their services or entitlements.
19. What would be the implications for disabled people and service providers if it was not possible for Personal Independence Payment to be used as a passport to other benefits and services?
It would be good news for adults with autism if Personal Independence Payments were able to be used as a passport for other services and benefits for the reasons that we have stated in answer to question 18.
20. What different assessments for disability benefits or services could be combined and what information about the disabled person could be shared to minimise bureaucracy and duplication?
There is no reason why all of the assessments that an adult with autism may require (this could include community care and social care assessments) could not be carried out all at the same time under the supervision of a specialist body who is, importantly, not part of the DWP. These assessments could be carried out by a local Community Care Team and a similar idea has been suggested in relation to children with SEN and how these are assessed. The outcome of the adult assessment would lead to a Disability Development Plan which would very importantly state the following:-
1. The person's disability and whether this was a statutory disability
2. How the disability impacts on them as an adult in relation to key areas such as well being, independence*, employability etc.
3. What support they are entitled to both in terms of benefits and whilst at work in the form of reasonable adjustments and ongoing support.
4. Explore areas of employment that the adult with autism may be capable of doing, as well as what kind of reasonable adjustments and support would have to be put into place for that adult.
5. All of the medical needs of the adult would be listed. This is important as adults with autism often have co morbidities and other disabilities in addition to their autism which impact on their autism and ability to function.
The Disability Development Plan could be reviewed for everyone after every 3 years.
There should be a mechanism to record significant changes with regards to disabilities and how they affect the relevant person. This may seem like a costly process but firstly it would be voluntary (i.e. if disabled person did not want to apply). However, if the disabled person wanted benefits or Community Care facilities we suggest it would have to be compulsory. It would be very beneficial to employers as it would give them more meaningful information about the disabled person.
Clearly the plan would have to be person-centered and a great advantage over the existing system. We have no reason to believe that this way of assessing would not save money in the long run whilst ensuring that the disabled person was given the relevant support when they needed it.
* National Autistic Society Campaign ‘I Exist’ 2008 61% of adults with autism rely on their families for financial support with over 40% of adults with autism still living at home.
21. What impact could our proposals have on the different equality groups (our initial assessment of which is on page 28) and what else should be considered in developing the policy?
It is essential that anyone who is involved in the process of assessing the needs of either a child or adult with autism must have received the relevant and appropriate training and must have a good understanding and awareness of Autistic Spectrum Conditions. If those involved in this process do not have the relevant understanding and awareness of the condition and have not received any appropriate training then it is possible that the person will not be fairly and appropriately assessed.
22. Is there anything else you would like to tell us about the proposals in this public consultation?
ACT NOW can not stress enough our concerns regarding adults with autism who remain ‘hidden’, unsupported and without provision within our communities. For these adults DLA is an absolute lifeline and allows them to access things that they would otherwise not be able to access without DLA, for example paying someone to do their shopping or helping them to attend appointments.
The Adults Autism Strategy ‘Fulfilling and Rewarding Lives’ has not had the opportunity to make a difference to the lives of adults with autism and ACT NOW remains uncertain as to the impact and how effective this strategy will be, given the current economic climate. ACT NOW is concerned that without DLA some adults will be unable to cope because they will be unable to fund the additional help that they require.
We are also concerned about the assessment process for these adults who may very well be called upon to account for their disability and how it impacts on their lives without having the back up of any medical evidence to support them.
It would be immoral and cruel to punish adults who have never met the criteria for services and provision in their own Local Authority by asking them to produce evidence from the services and providers that they have never been able to access. Some arrangement must be made for these adults to ensure that they are able to access independent autism specific medical support should they require supportive evidence.
Autism is a condition which is identified by three significant impairments, communication, socalisation, and imagination. Impairment indicates that there is either a part of your body or a function that stops you from doing something fully. In the case of autism the three impairments present impacts on the ability of the person with the condition to be able to communicate effectively.
Autism can also impair the understanding of self and that is a hugely important issue that needs to be taken into consideration when any assessments are undertaken on a person with autism. Impaired communication equals impaired understanding.
In addition to the triad of impairments sensory issues affect the ability of a person with autism to function well. Any assessment procedure must take into account the sensory needs of the person with autism and the fact that all 5 senses can be affected.
Autism is a complex condition that requires a wealth of understanding and knowledge and without that understanding and knowledge it is highly likely that the extent to which a person with autism is affected by the condition will not be recognised.
Carole Rutherford
Campaign Manager
For & On Behalf of ACT NOW (Autism Campaigners Together)
