A Better Future

Autism-in-Mind’s response to
A Better FutureA consultation on a future strategy for adults with autistic spectrum conditions
September 13, 2009
Carole RutherfordCo-Founder Autism-in-Mind

Consultation questions*
1a. The following themes have been identified as areas where action needs to be taken to improve the lives of adults with an ASC: • social inclusion • health • choice and control • professional training • employment Are there other themes that need to be included? Please tell us what they are

1b. If yes, are your suggested themes more or less important than the five key themes in improving the lives of adults with an ASC? • more important • less important of equal importance

2 If you are involved in service delivery or commissioning, can you tell us about the costs, benefits and risks of the services you are involved in and what outcomes they have achieved for adults with an ASC. Please provide details below.

3.In your experience, does ethnicity, gender, disability, age, sexual orientation and religion or belief have an impact on how adults with an ASC access and experience services and the quality of outcomes? Please highlight any measures we can take to reduce adverse impact and promote positive impact.

Social inclusion

The social inclusion chapter looks at the problems adults with an ASC can face when trying to access the support they need to live more independent lives and access the community in which they live. Stakeholders identified the following as key areas where action is needed to improve social inclusion: a) strengthening local leadership to help overcome the problem of adults with an ASC falling into the gap between learning disability and mental health
b) improving data collection and the way local authorities plan and commission services to ensure that the needs of adults with an ASC are taken into account
c) improving access to community care and ASC-specific support for adults with an ASC
d) improving access to housing, transport and public spaces for adults with an ASC.

4a. Do you agree that these are key areas where action is needed to improve social inclusion for people with an ASC? Yes/No/Unsure Yes4b. Please explain your answer.Strengthening Local Leadership

As well as strengthening local leadership, which is essential, Local Authorities (LAs) must begin to implement the Director of Adults Social Services’ guidance. Every LA needs to appoint a named person whose sole responsibility and remit is autism.

Every LA requires an Autism Partnership Board not dissimilar to the Learning Disabilities Partnership Board where health providers, commissioners, service providers, autistic adults, parents and carers will meet on a regular basis and whose focus it is to discuss how the needs of all adults with autism can be best met and to ensure that this is done.

At the moment accessing provision is somewhere between being very difficult and downright impossible for autistic adults. This is because social care is usually supplied via a team of people who all too often will not own responsibility for autistic adults. These adults do not come under the remit of any of the teams that are supplying provision.

PCTs need to clearly define under whose remit ‘all autistic adults’ will come for service provision. The service provided should be the one which best meets the needs of the individual. IQ must not be seen as a cut of point for provision. PCT’s must ensure that there are professionals working within mental health who are qualified and experienced in dealing with autistic adults.

Autistic adults are often let down by the lack of trained professionals who can understand their problems. There is not a gap between mental health provision and learning disabilities. There is a provision gap and that gap needs to be filled by autism specific services. LAs and PCTs need to identify services that can actively work to stop the social exclusion of adults with autism.

Data Collection

The Department of Health should look closely at the DasLne Data Base how it was set up and how it operates. The DasLne has proved to be an accurate and an anonymous way to collect data for children in the North East of England which could be replicated for adults. http://www.ncl.ac.uk/daslne/about_daslne.htm

It will only be possible to plan and commission service provision for autistic adults when there is accurate numbers of those needing to access services. IQ should not exclude any adult from access provision and those who are currently excluded need to be included in any data that is collected.Improving Access to Community Care

LAs and PCTs need to invest heavily in the training of all staff who work with or come into contact with autistic adults. This is especially important for anyone who carries out an assessment of need. It is impossible to carry out a meaningful needs assessment if the person undertaking that assessment has not received any autism specific training and has not got the necessary understanding of the condition.

Care and support is crucial for autistic adults and at the moment an eligibility criteria where the bar is raised far too high is ruling out vulnerable adults with AS and HFA who require care and support. Not only that but very often the care and support that is available is often not appropriate for autistic adults. Support should not only come in the shape of assessments but should also come in the shape of social skills training, mentoring, social groups and befriending. This form of support also helps to build self help and life skills.

Improving Access to Housing/Transport

To improve access to housing, transport and public services for adults with autism will first of all require an audit of the current provision and how it is currently accessed.

Housing must meet all of the needs of the autistic adults. At the moment the housing on offer is not only not meeting the needs of the adults it is often inappropriate. It is inappropriate to expect a young autistic adult to live in sheltered accommodation with elderly and infirm adults.

There must be a menu of provision and it must wrap around all of the needs of the adult including sensory needs. Planners must meet with and listen to autistic adults and their parents and carers and involve them as much as possible in the provision of a suitable place to live.

Public transport can be a nightmare for autistic adults as travelling on public transport can seriously overload sensory input. Local Authorities must ensure that local transport strategies include the needs of autistic adult’s right across the spectrum. They will need to identify and plan for sensory issues, communication; access and social needs and should do this by working with autistic adults and their parents and carers as well as professionals involved in the lives of autistic adults.

Local Authorities should look at the possibility of having special access times for autistic adults in places like cinemas, leisure centres, shopping complexes and other public places when sensory issues could be accommodated for. Some shopping centres have special Christmas opening times for people with disabilities but these special times never accommodate autistic adults or children. This is something that needs to be addressed.

5 Please provide details of your experiences of the challenges faced by adults with an ASC in the area of social inclusion (e.g. problems in accessing necessary support).

No provision/intervention/prevention/support for those with AS and HFA access! Adults do not meet the criteria to access the support that it available. Support that is available is often not what the adult requires.

6 What actions do you think should be taken to address the concerns raised in the social inclusion chapter (e.g. Development of a specific local or regional ASC team that could act as learning mentors and trainers to service providers, training of community care assessors, changing the application of eligibility criteria)

There needs to be Autism Partnership Boards in every LA. These Boards would provide a structure for building a better future for adults with an ASC. The Boards would also provide a base where everyone involved in the world of ASC would come together to share, plan develop and commission services. There should also be a local/regional ASC specialist team to aid diagnosis and to share knowledge and expertise with local providers and health care professionals.

Partnership Boards would be responsible for those elements of the Government’s proposals which relate to services for adults with autism. The Partnership Board would operate within the overall framework provided by Local Strategic Partnerships (LSPs). (LSPs) offer a framework for local partnership working, bringing together public, private, community and voluntary sectors in order to provide effective co-ordination.

Proposals for partnership working in relation to autism will fit within the overall umbrella offered by LSPs.Close links between Autism Partnership Boards and LSPs will ensure a common direction and help to address wider issues, such as access to other local services, including transport.

Autism Partnership Boards will be responsible for:
• Developing and implementing the Joint Investment Plan for delivering the Government’s objectives;
• Overseeing the inter-agency planning and commissioning of comprehensive, integrated and inclusive services that provide a genuine choice of service options to autistic people in their local community;
• Ensuring that autistic people are not denied their right to a local service because of a lack of competence or capacity amongst service providers;
• The use of Health Act flexibilities;• Ensuring arrangements are in place to achieve a smooth transition to adult life for young people with autism.Autism Partnership Boards should particularly ensure that:
• Adults with ASC and carers are able to make a real contribution to the Board’s work;
• The cultural diversity of the local community is reflected in its membership;
• Local independent providers and the voluntary sector are fully engaged.

It will be the responsibility of the chief executive of the local council to ensure that the Partnership Board is in place. Membership should include senior representatives from social services, health bodies (health authorities, Primary Care Trusts (PCTs)), education, housing, community development, leisure, independent providers, and the employment service.

Representatives of people with autism and carers must be enabled to take part as full members.Minority ethnic representation will be important in view of the Government’s commitment that their needs should not be overlooked.An Autism Development Fund and Implementation Support Team would need to be established.

7. If possible, please give examples of where these concerns have been successfully addressed at a local level.

Health

The health chapter looks at the challenges faced by adults with an ASC as they try to access diagnosis and post-diagnostic support. It also looks at accessing general and specialist healthcare services (including mental health). Stakeholders identified the following as key areas where action is needed in relation to healthcare services:
a) improving access to diagnosis and post-diagnostic support (e.g. through changes to local or regional structures)
b) improving data collection and the way health authorities plan and commission diagnostic and specialist health services for adults with an ASC
c) making healthcare settings such as GP surgeries more accessible for adults with an ASC
d) improving the understanding of ASCs among mental health professionals and developing interventions to reduce the risk of people with an ASC developing additional mental health problems.

8a. Do you agree that these are key areas where action is needed? Yes/No/Unsure Yes8b. Please explain your answer.a) improving access to diagnosis and post-diagnostic support (e.g. through changes to local or regional structures)

We need local/regional teams set up across the country not only to help with the diagnosis of an ASC but to aid and support, intervention and continuity of care for adults with an ASC. Diagnosis should always be the beginning of life-long support and care for a person with an ASC. With a diagnosis should come a sensory profile and also access to professionals who can look at the biomedical side of autism should that person require medical help for any health related issues that they have as a result of biomedical issues.

We must start to include the sensory and the biomedical needs of autistic adults’ as well as looking for the well known co-morbidities, right from the point of diagnosis because these issues can impact greatly on autistic adults and how well they function. AIM is aware that sensory overload can impact on the ability of someone with autism to communicate their needs. Sensory overload can lead to a person shutting down and being unable to focus on anything else other than the invasion of their senses.

We need clearly defined pathways for all autistic adults and service provision that does not have a cut of point which is usually IQ. Autistic adults need to assured that all of their health needs will be met and that someone within every LA and PCT has the responsibility for their health and well-being.

Local Leadership has a very important part to play in the health needs of all autistic adults being met. Each LA/PCT requires a named person whose sole remit is wrapped around the needs of autistic adults. Services for autistic adults need to be commissioned on a needs basis and well structured. At the moment there is very little if anything available for autistic adults to access in the way of prevention or intervention.

Given that autism is a lifelong condition there is a requirement for lifelong services. Many autistic adults would benefit from counseling services on a regular basis, however some adults will not be aware themselves that they are in need of provision because they do not recognise that their health/behaviour has changed. So it is important that a constant even if benign presence be in the lives of our adults. This could be via a health worker or suitably trained social care worker or someone who has regular contact with the adult who would notice if there had been a change in that adult and if intervention was required. This is why it is very important that our adults are under someone’s remit and that there are people who do see our adult children on a regular basis when they move out of Children’s Services.

Parents would also need to know the services that are available to their adult children should they require them and any concerns that parents or carers raise about their adult children should not be dismissed as ‘over-involved’ parenting and should be taken seriously. The commissioning of this type of service would go along way towards stopping autistic adults from having to reach crisis point before there is any provision available to them and even then it is often not the correct provision.

Every mental health service requires fully trained professionals who are qualified to address the mental health issues that autistic adults can present with. Unless mental health services have suitably qualified and trained people we run the risk of the symptoms that someone is presenting with and not the cause being treated.

The gap that is often talked about between mental health services and disability learning is not a gap that needs to be closed it is a gap that indicates a lack of autism specific provision and this is a health issue that urgently requires action. We must stop trying to fit autistic adults into a provision that is not right for them.

Many of the mental health issues that autistic adults suffer from could be addressed by preventative service provision and would be a better use of resources and funding in the long run than having to treat someone at crisis point. We require multi-agency commissioning partnerships that will consult and work with all of the professionals working with autistic adults along with the adults themselves and their parents and carers to ensure that the right services for autistic adults are commissioned and to make the best use of the resources that are available to them.

b) improving data collection and the way health authorities plan and commission diagnostic and specialist health services for adults with an ASC

There is a real shortage of information on the prevalence of ASC among adults both nationally and at local levels. This means that people with autism are not properly taken into account in national or local planning. This is an issue that needs to be addressed quickly but will not be easy to do as many adults with ASC do not qualify for services or provision and are hidden within the system. Some adults are not even known to their GPs. It is imperative that we find someway of finding these adults. It is also imperative that we begin now by accurately recording the numbers of children with a diagnosis of autism including those who are not eligible for services or provision.

In the North East of England we have the Daslne data base.

‘Daslne is a database of children with autism spectrum disorder living in the North East of England. The idea behind the database is to help in planning services for children in the region. The database can also be used as a basis for research into our understanding of ASD. Why become involved?‘The database has many potential benefits. It will give accurate reports about children with ASD in the North East of England. Parents can ask for these reports.The database will answer important questions about changes in the numbers of children with ASD and their needs. This will give all services and voluntary organisations accurate information to plan ahead to provide high quality suppose and services to you and other families.’

We need to see replication of the Daslne or a similar method of accurately recording the numbers of children across England who have a diagnosis of ASC. This will ensure that service provision can be planned for, for those who are making their way towards adult services.

An audit of GPs should be undertaken to see how many adults with an ASC are on their panels. This would at least be a start point for finding those who are hidden within the system. Until we have accurate numbers we will never be able to provide services that we can be sure are wrapped around all autistic adults. c) making healthcare settings such as GP surgeries more accessible for adults with an ASC Reasonable adjustments can make a great deal of difference to someone with autism. Appointment times could be altered and extended where possible to meet the needs of someone with autism. There should also be a quite waiting area for an adult to wait away from the main waiting area. One would expect that GPs and their staff would be aware of the difficulties that autistic adults experience when having to visit their surgery but sadly this is often not the case. Surgeries and waiting areas can result in sensory overload which then impacts on the communication skills of the adults meaning that when the adult is finally seen by their GP the adult is unable to communicate their reason for being there. GPs and other healthcare staff often either do not know or else ignore the fact that the adult they are seeing is autistic.

In hospitals staff rarely make adjustments or understand the stress and anxiety that an autistic adult experiences just by being in a surgery or hospital. d) improving the understanding of ASCs among mental health professionals and developing interventions to reduce the risk of people with an ASC developing additional mental health problems.

The Royal College of Psychiatrists must ensure that psychiatric training must include experience in the diagnosis, assessment and management of adults with an ASC. It is impossible to understand how someone without that training is able to effectively treat someone with an ASC. The Department of Health needs to work with all the Royal Colleges, the Postgraduate Medical Education and Training Board and other professional bodies to ensure that recognition of ASC. PCTs must also ensure that workforce development plans will address the training needs of all health professionals in relation to ASC.Ideally the local or regional specialist teams that AIM is saying are necessary will be able to, through their expertise share their knowledge and understanding of ASC with all parts of the health service.

9.Please provide details of your experiences of the challenges faced by adults with an ASC in the area of diagnosis and health.

AIM is contacted not only by adults or parents and carers who feel that they themselves or their adult child might have an ASC but also by GPs who have no idea who or where to refer their patient on to for a diagnosis. This clearly shows that there is no clearly defined pathway for referral or diagnosis for adults who suspect that they might have an ASC.

Adults often encounter problems with their GPs who will not accept that they could have an ASC and make it impossible for an adult to progress any further in their quest to find out if they do in fact have an ASC. This all adds up to a lack of knowledge, understanding and training.

The adults that AIM is in contact with or who have contacted AIM have Aspergers Syndrome or High Functioning Autism. The vast majority of these adults have no on-going health provision, no preventative service provision and no idea how to access help should they require it. The majority have had no access to any one who can help them to manage their condition since leaving children’s services. These adults tell us that they do not meet the criteria to enable them to access provision.

The diagnostic criteria for AS and HFS fulfills the full tried of impairments so why do these adults find themselves cast adrift without any care or support when we are all fully aware that autism is a lifelong condition. Adults tell us that having to access other areas of the health service is not easy for them and many health professionals have no understanding of the condition. Even if the diagnosis of autism is written into their notes, and it is not always the case that it is, the professionals appear not to realise that having an ASC could make it harder for that adult to communicate and that they might need the person who they are seeing to be more patient and understanding.

Mental Health services is a big area of concern as these teams often have very little if any knowledge of ASC and we have been told by parents that accessing a team who does not have the required level of knowledge of expertise in ASC can actually make mental health issues worse. All adults with ASC should be able to access mental health professionals who have had the necessary training and are therefore able to understand and help the individual accessing the service.

Case History.

One adult with an ASC who also has a severe visual impairment which requires on-going treatment and visits to and eye hospital stopped attending because of the lack of understanding and knowledge of his ASC. Despite the diagnosis being written into his notes there were no reasonable adjustments made to make the necessary visits to the hospital easier for the adult.

The eye specialist had no understanding of ASC and was quite unhappy that the mother of the adult attending had asked to go into the consulting room with her son. He was irritated by the mother asking questions and also answering some of the questions on behalf of her son. Even after it was explained to him that the adult was extremely stressed and anxious because of the hospital visit and that stress and anxiety affected his ability to communicate affectively it made no difference to the consultant’s attitude. The ASC was completely ignored.

Because of the on-going nature of the eye condition the adult had to attend the hospital to have regular checks with the optometry department. The adults saw a different optometrist at every appointment and it had to be explained at every appointment that he had an ASC. While some of the optometrists did do their best to accommodate the adult some either ignored what they had been told or then spoke to the adult as if he had a hearing problem. The adult eventually stopped going for treatment because he was finding it so stressful.

10.What actions do you think should be taken to address the concerns raised in the health chapter (e.g. better record keeping, the development of diagnostic services, training of key professionals)?

The development of diagnostic services is essential and such a unit should be found in every LA/PCT or the LA/PCT should have access to a peripatetic specialist team who are able to diagnose adults with ASC.

These teams would be an excellent source of knowledge and training which could be fed into LAs/PCTs via the expertise of the team.Better record keeping is also essential and AIM would strongly suggest looking at the Daslne data base to see if it can be adapted and adopted for keeping accurate numbers and records of adults with an ASC.

Key training is a big issue and all professionals working with adults with ASC all professionals require autism specific training. For those already in post that training must be made available to those professionals via their own LA/PCTs who must also be required to make sure that all training is accredited and from a reputable source. LA/PCTs must be required to identify the need for training, have written requirements to cover training and implement their training plans.

11.If possible, please give examples of where these concerns have been successfully addressed at a local level.

The following case study was given to the members of the External Reference Group Health Chapter by AIM


CASE STUDY – REASONABLE ADJUSTMENTS

A mother of two sons, both of whom have an ASD, says that her GP is the only means of support that they have.She says: “He is aware that both function better in the afternoon and so we are always given afternoon appointments. If possible we are given his last appointment so that he can spend longer with our sons if he needs to. It is also quieter then. He is quite happy to let my eldest son who is 21 read any books with information regarding treatment and also his notes on the screen to make sure that he is happy with what has been written. He is also aware that our eldest is more comfortable speaking to some of the doctors within the practice than others and this has been noted without it becoming an issue.If there are no appointments available we can speak to any receptionist and state that we have an arrangement with the practice and we have always been able to see someone within 24 hours. This goes right across the board within the practice. The asthma clinic, which usually runs on a morning, will also see our son in the afternoons. I have no doubt that we would sink were it not for the understanding and adjustments made by our GP and his practice. A little understanding really can go a very long way.”

Choice and control

The choice and control chapter looks at the barriers that prevent adults with an ASC from having choices and taking control over their lives. Stakeholders identified the following as key areas where action is needed to ensure adults with an ASC have more choice and control over their lives:
a) ensuring that personalisation (including access to person-centred plans and to personal/individual budgets) is made to work for people with an ASC. b) improving transition planning c) improving access to advocates and self advocacy support d) ensuring adults with an ASC are better involved in service development and the development of policy that affects them, including making policy and consultation documents more accessible.

12a. Do you agree that these are key areas where action is needed? Yes/No/Unsure Yes12b. Please explain your answer.a) ensuring that personalisation (including access to person-centered plans and to personal/individual budgets) is made to work for people with an ASC.

AIM is aware that currently only 27% of autistic adults have a person-centered plan. One reason why so few autistic adults have a person centered- plan could be because adults with AS and HFA find it difficult to meet the criteria which allows them to access services.

Some adults with AS and HFA have been without provision since leaving Children’s Services. Although we realise that anyone can initiate a person-centered plan AIM wonders how Autistic Adults are supposed know that that they can have a person-centered plan and what a person-centered plan actually is without having ever been given the information about these plans. To ensure that personalization really does apply to Autistic Adults LAs and PCTs must locate and identify the Autistic Adults who are without services.

If all autistic adults had an on-going person-centered plan that would go a long way towards addressing many of the issues that autistic adults struggle with, including personal budgets, housing, and social inclusion. It is difficult to imagine that an autistic adult can be successfully included into their community without ever having been asked what they themselves would see as being successfully included.

At the moment far too many autistic adults have any choice or control over their lives and far too many autistic adults are excluded not only from actively participating in their community but also from service provision.Adults with an ASC, their families, supporters and user-led organisations must play a central role in developing policy both nationally and locally and also be included in service development.

It is essential that LAs and PCTs must follow their statutory duties to ensure that they consult with and involve people with ASCs their families, carers and supporters in the writing of policies and the development of services. This involvement must be meaningful and not tokenistic. All adults with an ASC must know how they can access an advocate (who has had specific training in ASC) if they need one.

There needs to be a greater emphasis on the need to train advocates. AIM has concerns about personal budgets for people with autism. There is very little data and information available at the moment to suggest that they can and do work for people with autism. AIM would like to see the DOH look closely at the outcomes for people with autism and personal budgets.

We believe that more research is required to ensure that personal budgets can work well for adults with ASC.There also has to be an assurance that the budget that is allocated to an adult with ASC is adequate and will enable to buy in all of the services which they require to meet their needs.

At the moment that National Autistic Society has found that 63% of adults with ASC do not have enough support to meet their needs. We need to be sure that personal budgets improves this situation and does not in reality make it any worse that it is now.b)improving transition planning Every Local Authority has a duty to support young people with autism through transitions.

However there is evidence to suggest that transition is far from easy for autistic young people and that LAs are failing in their duties to support these young people through transition.

Case History

'Our daughter wants to go to University and if she does get the required grades we have no information or sources of information on how to ensure she will be supported in such a huge move, which will include leaving home and living independently. Will she have academic support will there be any funding or grants available for her? We have no idea where to start, but are already worried as experience has taught us that this will take a long time to arrange, if indeed anything is available.

This is the biggest transition - the end of schooling and support to move into the outside world is sadly totally lacking. We get the impressions that if she had failed her GCSEs she would now be sitting at home with us, with no job, no training and no social activity. No-one at all would be aware that she had slipped off the radar and out of the system, with no provision or support, as we have no intervention other than the school-based Statemented provision of learning support.'

The difficulties with transition have been recognised and documented by the Department of Children Schools and Families and have developed a transition support programme aimed at improving this often difficult and stressful time for young people. The All Party Parliamentary Group has also published a report on transition and it highlights the issues and problems that young people with an ASC face during transitions in their lives. AIM would like to see the recommendations put forward by the APPGA accepted. The report and it’s recommendations can be found here http://www.autismspeaks.org.uk/document_downloads/pdf/Transition%20Report%20June%202009.pdf

b) improving access to advocates and self advocacy support

Advocacy is a service that should be available to everyone who has an ASC. Autism is a social and communication condition which can impact greatly on the lives of those who have the condition. Stress and anxiety can also make it very difficult for a person with an ASC to communicate effectively. Being able to access a fully trained advocate would make it easier for a person with an ASC to communicate and process any information that is verbalised to them.

Trained advocates can enable a person with an ASC to best express their views and opinions. AIM sees advocacy as a preventative provision because failing to express your needs, views and opinions can lead to heightened stress and anxiety levels which over a period of time can lead to mental health issues.

LAs should take responsibility for finding and training people to act as advocates for adults with an ASC. It would also make sense for LAs to help support voluntary groups who work with adults with ASC and offer them the opportunity to train as advocates and where possible offer adults with ASC the opportunity to learn how to become self advocates.

d) ensuring adults with an ASC are better involved in service development and the development of policy that affects them, including making policy and consultation documents more accessible.

Adults with ASC should be involved in all areas of service development including writing and developing policy. If Autism Partnership Boards were set up in every LA they would provide the opportunity for autistic adults to be members of the board and to feed into policy and planning within their own LAs. The members of the Partnership Boards could then meet with a wider group of people and feed back their views and opinions to the Partnership Boards. Autistic adults have got to be included from the very beginning and not half way through a course of action that it is going to be very difficult for anyone to alter. The way in which adults feed into this process must also be meaningful for them and take into consideration that they might require help to communicate their views and opinions.

13.Please provide details of your experiences of the challenges faced by adults with an ASC as they try to make choices and take control over their lives.

Far too many adults with ASC are unable to make choices or take control over their lives because they have yet to be identified as needing support and so are living, often at home with their parents are unsupported by the system, ineligible for provision with no person-centred plan and no idea what is going to happen to them in the future. These adults need to be identified and should be the responsibility of someone.

Parents are unaware that their adult children could have a person-centred plan and if parents had this knowledge they could help to initiate such a plan and it might address some of the concerns that parents have about their adult children knowing that there was something in writing that was wrapped solely around that adult child.

14. What actions do you think should be taken to address the concerns raised in the choice and control chapter (e.g. ensuring that person-centered plans are more widely available, development of brokerage, advice and advocacy services, including people with an ASC in the development of individual/ personal budgets)?

The issues raised in this Chapter could be addressed by the implementation of Autism Partnership Boards. Named people are required within LAs and PCTs who are responsible for identifying adults with an ASC who are hidden within their LAs and not known to providers. Even if these adults do not need provision at this time they should be offered a person-centered plan and the benefit of having these plans needs to be fully explained to them. Even if something is available you have to know that it exists before you are able to access it.

Having tried to access provision and failed some autistic adults give up and stop trying. All of the services listed above need to be seen as preventative services and should be given a much higher profile and priority and developed within LAs.

15.If possible, please give examples of where these concerns have been successfully addressed at a local level. Awareness raising and training


The awareness raising and training chapter looks at the lack of awareness of ASCs among the general public and the lack of training in ASCs among a number of groups of professionals and some of the problems this can cause. Stakeholders identified the following as key areas where action is needed to improve awareness of and training in ASCs:

a) the development of both national and local awareness raising campaigns targeted at both the general public and at more specific groups of people (e.g. employers, those working in the criminal justice system) b) targeted training programmes for certain professions such as social workers, community care assessors, healthcare professionals, those working in housing and in employment support c) the inclusion of ASC in social work degrees and clinical curricula.


16a. Do you agree that these are key areas where action is needed? Yes/No/Unsure Yes16b. Please explain your answer.

a) the development of both national and local awareness raising campaigns targeted at both the general public and at more specific groups of people (e.g. employers, those working in the criminal justice system)

Someone must take responsibility for raising awareness of ASC both National and Locally. The DOH should work closely with Local Authorities and PCTs to develop a national training strategy which would encompass anyone who, because of their jobs, comes into contact with or works with Adults with ASC. The necessity for training needs to be clearly spelt out by the DOH so that LAs and PCTs are left in no doubt that they have a duty and responsibility to ensure that their staff is appropriately trained.

Training must be mandatory for all LA and PCT professionals whose job might involve them working with an autistic adult. Training of the LA and PCT workforce should be addressed as a priority and as in the first part of a national awareness raising strategy. Other bodies and groups of people should also be targeted for training including groups in the third sector some of whom could help with the awareness raising strategy.

GPs and hospital workers and anyone on the front line of service provision should be required to undertake training. It is essential that all health and social care professionals are receive the appropriate and accredited training that they require to carry out their jobs.

Training should also be mandatory for anyone who is in a position where they are carrying out FACs, Continuing Care and Community Care assessments. A lack of suitably trained professionals is creating barriers for people with ASC and because of these barriers adults with an ASC are either failing to or are unable to access the support that they require right down to obtaining a diagnosis.

b) targeted training programmes for certain professions such as social workers, community care assessors, healthcare professionals, those working in housing and in employment support

It is essential that all health and social care professionals are receive the appropriate and accredited training that they require to carry out their jobs. No one should be assessing the specific and complex needs of a person whom they have no understanding or awareness of.

Training should also be mandatory for anyone who is in a position where they are carrying out FACs, Continuing Care and Community Care assessments. As a minimum requirement there should be an ASC Aware ‘named’ person working within housing and employment who have been suitably trained so that other members of staff have a point of contact and someone who they can themselves approach if they are working with someone with an ASC whom they have little understanding of.

As a continuing part of awareness raising those working outside of health and social care should be asked to train members of their workforce to act as ASC aware ‘named’ persons. This would be a good starting point until training can be fed down to all personnel.

AIM would also like to see ASC aware ‘named’ members of staff within the benefits system again this would begin to address the need for greater awareness and understanding of ASC but should only be a starting point for training that would include the workforce as a whole. Other targeted groups should include all emergency service workers, those employed in the leisure industry (who again could begin by having ASC aware named members of staff) and also those employed in the transport industry.

Professionals working in Human Resources should also be included into a target group for awareness training. It is essential that training an understanding of ASC is not limited to healthcare/public sector services but is disseminated to the wider world of work. Autism Awareness training should be included in the syllabus of HR professionals so that large companies (who are sometimes more willing to offer employment to vulnerable adults) at the very least would have someone with knowledge and understanding of ASC. Those HR people who are trained could help to input into company policies to ensure these adults are integrated into the company culture and able to access social activities provided within the company.

c) the inclusion of ASC in social work degrees and clinical curricula.

Core training and awareness of ASC should be built into not only social work degrees (although this is an absolute must) but also into every degree course or curriculum of anyone who is training to be a health or social care professional. For those already in post there should be a requirement that the training needs of those people are identified and that training is carried out as soon as possible by suitably qualified and accredited training providers.

Training is also desperately needed within the criminal justice system and there should be a mandatory requirement for those working through this criminal justice system to receive training.

AIM would also like to see ASC aware ‘named’ members of staff within the benefits system again this would begin to address the need for greater awareness and understanding of ASC but should only be a starting point for training that would include the workforce as a whole.

17.Who are the priority groups for awareness raising and training and why?

Priority Groups should include
GP’s and all front line medical professionals
Mental Health Workers
Dentists
Social Care workers
Assessment workers
Housing Groups
Employment Advisors
Employers
Criminal Justice System
Transport workers
Benefit Agency Staff
Human Resources

The reasons why these professionals require training is explained within the other answers.

18. Is there anything else that you would like to tell the Government about the need for greater awareness of ASCs and training in the condition?

Training is without doubt the most important requirement to be detailed within the adult’s strategy. Working with adults with ASC without the appropriate training is not only unacceptable it can be quite dangerous.

AIM is aware of parents and adults who have accessed both social care and health provision and have professionals who have been assigned to them or who have assessed the needs of the adults who have actually made the lives of the people who they were meant to be helping much worse. Mental Health staff who have not received the appropriate training often make suggestions to improve the mental health of adults that are not possible to carry out or prescribe inappropriate medication. You can not tell someone with an ASC who finds all forms of social interaction not only difficult and extremely stressful to join a club or group and that they need to get out more. Going out is often part of the problem and adults with and ASC often seek medical input because they are depressed and feel as if they are failing. Being told to do something that is already difficult for you can only add to that sense of failure and increase the level of depression.

AIM is also aware of parents who have contacted social care for help only to find that because of a total lack of awareness and understanding of the condition some families have actually found their adults been removed from their care and on more than one occasion committed.

AIM has been raising the necessity for training within Social Care for some years now and has met with Ministers to express their grave concerns about the lack of suitably trained social care workers.

Case Study

Debbie Story a member of AIM was an adult with ASC who had two sons diagnosed with Aspergers Syndrome one also with a diagnosis of ME. Debbie’s sons were placed on the child protection register with care proceedings being threatened because of unfounded accusations of fabricating illness. Debbie had been educating her two sons at home because their needs were not being met within the education system. Social care became involved when Debbie and her husband asked for some none educational support with their sons. Unfounded accusations were made that Debbie was emotionally harming her sons. Debbie and her husband were put under enormous stress and found themselves having to work round the clock and find people who understood ASC (both Simon Baron Cohen and Tree House became involved) in a bid to clear their name after the accusations were made by an unqualified social worker. Luckily because Debbie and her husband were able to find people who understood ASC and who were willing to help the family to clear their name, the care proceedings were dropped and the children’s names were removed from the child protection register. However while Debbie was fighting to keep her family together she became unwell. It was suggested to Debbie by a health care professionals that she was merely seeking attention and because of her battle with Social Services Debbie became too afraid to seek help for herself. 5 Months after clearing her name and having the names of her son removed from the child protection register Debbie died of kidney cancer. Training MUST be our number one priority because until it is what happened to Debbie could happen again.Access to training and employment


The training and employment chapter looks at the challenges faced by adults with an ASC as they try to access employment and training opportunities. It also looks at accessing benefits. Stakeholders identified the following as key areas where action:
a) ensuring that adults with an ASC can access the particular supports they need to find and hold on to a job
b) improving awareness of ASCs among employers and supporting them to make reasonable adjustments in the workplace for adults with an ASC
c) making the benefits and tax credits system more accessible for adults with an ASC
d) making training and educational opportunities more accessible for adults with an ASC.

19a. Do you agree that these are the key areas where action is needed? Yes/No/Unsure Yes19b. Please explain your answer.ensuring that adults with an ASC can access the particular supports they need to find and hold on to a job

Education, Education, Education this word has been on the Government’s lips since it first took office in 1997. With education came inclusion. In 2001 the revised Code of Practice meant that the Government’s inclusion policy really began to gather pace.

In 2004 the Children’s Act put into law the recommendations of Every Child Matters. The Every Child Matters agenda is really about delivering the five outcomes for children and young people in the

Children Act. They are:
• 1. Be healthy
• 2. Stay safe
• 3. Enjoy and achieve
• 4. Make a positive contribution
• 5. Achieve economic well-being

To enable someone to enjoy and achieve, make a positive contribution and achieve economic well-being and secure employment our current school system must ‘include’ subjects that are currently not taught within the national curriculum, but are essential for children with autism if they are ever to stand a real chance of gaining employment.

Although qualifications are of course very important when an adult looks for employment so to are the effective communication and social skills that that adult will require to enable them to use their qualifications in a work place. Despite the battle cry of Education, Education, Education, the inclusion agenda and the 5 aims of Every Child Matters it would appear that how to prepare young people with and ASC to be able to take their place in a workforce was never included in any of these plans.

Sitting a child in a class room with 30 of its peers will not automatically ensure that the child with ASC will ‘pick up’ the necessary effective communication and social skills that it will require to work in its adult life.

When we look at ways of encouraging employers to employ autistic adults we must also address the fact that leaving the skills that autistic adults are going to require in a working environment until they become adults is too late. We have to go right back to basics and include subjects in the curriculum (and not just in special schools we must remember that inclusion means that the majority of children with an ASC are now educated within a mainstream setting) that are going to enable our children to have a much better chance of gaining employment. At the moment we are not doing this and that has got to be our starting point for future generations. Although this strategy is for adults with an ASC we must surely hope to correct some of our mistakes and make the path to employment easier for future generations of autistic adults than it is at the moment.

However we must also strive to improve the employment chances of autistic adults today and to achieve this there are many barriers to employment that must first of all be identified and then removed. Central Government must play a big part in the identification and removal of the barriers to employment.

AIM would like to see the Department of Employment produce an employment strategy for autistic adults in a similar way to their ‘Valuing Employment Now’ strategy for people with a learning disability. Those autistic adults who also have a learning disability must have their autism recognised and so a ‘Valuing ‘ALL’ Autistic People’ employment strategy is essential to help all autistic adults to find a place in the workforce. AIM would like to see all autistic adults come under one umbrella which would then recognise and addresses the specific needs of those adults.

The Department of Employment must also work with relevant stakeholders and examples of good practice in employment should be collected and recorded to demonstrate the types of support and an adult with ASC might require to enable them to first of all secure employment and then be successful in that employment.b) improving awareness of ASCs among employers and supporting them to make reasonable adjustments in the workplace for adults with an ASC.

It is essential that those working in employment, benefits and education are more aware and better trained in ASD, so that adults with ASD are better supported in these areas to reach their potential.AIM would like to see an ASC champion in every LA whose role would include raising awareness of the benefits of employing an autistic adult. There are many positive attributes that autistic adults can take with them into employment. Being highly motivated and focused in a very positive trait for any employee as is working hard and being able to perform repetitive tasks to a very high standard. Autistic people are known to be excellent when paying attention to detail which must surely be a skill that is much sort after in many professions. An ASC Champion would make employers aware that in some other countries like Denmark they are already seeing the advantages of employing adults with an ASC http://news.bbc.co.uk/1/hi/health/8153564.stm

At the moment employers lack awareness that autistic adults do have valuable skills that they could bring to a workforce and much could be done to improve this. Employers would of course also need to be made aware for the need of flexibility when employing an autistic adult and some of the issues that adults with and ASC can often find difficult including sensory issues. However there is nothing that some reasonable adjustments could not overcome for many autistic adults and this too would need to be positively conveyed to prospective employers. c) making the benefits and tax credits system more accessible for adults with an ASC Negotiating the benefits system is not an easy task for someone who has both communication and socalisation issues. Many autistic adults are not even aware of the benefits that they should be claiming.

AIM would like to see ‘ASC aware’ named people working within both the benefits and employment agencies. This would be a starting place for greater awareness and understanding of ASC and also part of a consistent approach to train all staff working within the benefits and employment agencies. There also needs to be a reappraisal of the forms that are used at the moment for autistic adults to claim benefits and amendments need to be made. In ‘Valuing Employment Now’ information that is required about benefits is in accessible and easy-read formats.

AIM would like to see something similar designed especially for autistic adults. This could be included in a ‘Valuing ‘ALL’ Autistic People’ Employment Strategy.

d) making training and educational opportunities more accessible for adults with an ASC

There needs to be a much greater emphasis placed on empowering and making autistic adults ready to seek and secure employment. Educational opportunities must include skills that are required both at an interview and in a workforce/place. We can not expect autistic adults to know what to do at job interviews and we are failing them by not offering them training courses wrapped around interviews and real life working situations. This type of training needs to begin within our school system. It is unacceptable to leave acquiring these skills until just before we expect the adult to seek employment and worse still not having any where for those adults to learn these skills. Adults with an ASC need to access timely and appropriate support in preparing for work and looking for work, this should include voluntary work. They should also be able to access the support they require in a work place.

AIM would like to see working mentors in place for autistic adults to help them for at least the first year of their employment lives. This is something that could be added to a ‘Valuing ‘ALL’ Autistic People’ Employment Strategy.

20 Please provide details of your experiences of the challenges faced by adults with an ASC as they try to access employment, training and benefits.

Current statistics state that only 15 per cent of adults with ASC are in employment compared to 48 per cent of the whole population of people with disabilities. This means that adults with ASC are at an even greater disadvantage than other disabled people when it comes to getting some form of employment.

Research needs to be undertaken to see why people are at a greater disadvantage when seeking and securing employment than people with other disabilities. Training opportunities have got to be designed appropriately for adults with an ASC and those adults have got to know that those training opportunities are available to them.

21.What actions do you think should be taken to address the concerns raised in the training and employment chapter (e.g. training for those who offer employment support, awareness campaigns among employers, changes to contracts so that progress towards work is rewarded)?

Establishing Autism Partnership Boards would address all of the issues raised within this Chapter.

22.If possible, please give examples of where these concerns have been successfully addressed at a local level. Further comments

23. Do you have any additional comments about what should be included in the strategy for adults with an ASC?

It is essential that a vehicle is found to power the strategy when it is ready to roll out. If there is no joined up way of driving the strategy AIM fears that it will take years to make any difference at all to the lives of those who are desperate for services, provision and resources.

AIM believes that it is essential that the strategy is powered by one vehicle and that the strategy is not split up and passed on to other already up and running initiatives like ‘Valuing People Now’ to include in its remit. Autistic Adults have waited a very long time for something that has some weight behind it that can begin to address their often specific and complex needs. Autism does not sit neatly into any other disability box. While we understand that the current economic climate is not good we would also like it to be remembered that this is the very first autism specific initiative that autistic adults have had pointed in their direction and that their best hope of making sure that the strategy delivers it’s much needed promise is for it not to be fragmented.

AIM has been ardently campaigning for the last few months to ensure that ‘Every’ autistic adult is valued. While it might be possible to add some parts of the strategy to initiatives like ‘Valuing People Now’ AIM wonders how the rest of the strategy will be delivered for adults with AS and HFA who are already lost within the system with many not existing at all. AIM’s campaign ‘Valuing ‘Every’ Autistic Person’ has over one thousand two hundred parents/carers and autistic adults who have added their names in support of what AIM believe is needed to drive forward the Adult Strategy’.

AIM believes that the strategy requires Autism Specific Partnership Boards. Partnership Boards whose remit is solely wrapped around autistic adults, but who will also work closely with Children’s Services to ensure that the transition from child to adult’s services is as seamless as possible and that children are not lost to provision in during that transition. These partnership boards could be set up in a similar way to the Learning Disability Partnership Boards but would be totally autism specific and would also include autistic adults who have a learning disability.

AIM believes that we need to start addressing the needs of all autistic adults because although some autistic adults do have a learning disability their autism must not be neglected. Learning disability services are not specifically designed to meet the needs of autistic adults who have a learning disability. Partnership Boards would be responsible for those elements of the Government’s proposals which relate to services for adults with autism.

The Partnership Board would operate within the overall framework provided by Local Strategic Partnerships (LSPs). (LSPs) offer a framework for local partnership working, bringing together public, private, community and voluntary sectors in order to provide effective co-ordination.Proposals for partnership working in relation to autism will fit within the overall umbrella offered by LSPs.Close links between Autism Partnership Boards and LSPs will ensure a common direction and help to address wider issues, such as access to other local services, including transport.Autism Partnership Boards will be responsible for:•
Developing and implementing the Joint Investment Plan for delivering the Government’s objectives;
• Overseeing the inter-agency planning and commissioning of comprehensive, integrated and inclusive services that provide a genuine choice of service options to autistic people in their local community;
• Ensuring that autistic people are not denied their right to a local service because of a lack of competence or capacity amongst service providers;
• The use of Health Act flexibilities;
• Ensuring arrangements are in place to achieve a smooth transition to adult life for young people with autism.Autism Partnership Boards should particularly ensure that:
• Adults with ASC and carers are able to make a real contribution to the Board’s work;
• The cultural diversity of the local community is reflected in its membership;
• Local independent providers and the voluntary sector are fully engaged.

It will be the responsibility of the chief executive of the local council to ensure that the Partnership Board is in place. Membership should include senior representatives from social services, health bodies (health authorities, Primary Care Trusts (PCTs)), education, housing, community development, leisure, independent providers, and the employment service.

Representatives of people with autism and carers must be enabled to take part as full members.Minority ethnic representation will be important in view of the Government’s commitment that their needs should not be overlooked.An Autism Development Fund and Implementation Support Team would need to be established.

While AIM is fully aware that not all Learning Disability Partnership Boards are working as well as they could be we are also aware that many now are delivering and that the good working practice that has been developed by successful Learning Disabilities Partnership Boards could be used to help set up Autism Partnership Boards.

The Autism Communities best hope of this strategy making the difference that is needed to build a better future for autistic adults will be to have autism specific providers, users, developers commissioners and policy writers under one umbrella where all of the main players and stakeholders can meet on a regular basis and can together plan the way ahead for autism services, provision, resources, training and awareness.