Implementing the Strategy Consultation Response

Autism-in-Mind’s response to the statutory guidance for local authorities and NHS organisations to support implementation of the autism strategy About Autism-in-Mind (AIM) AIM was founded in 2001 by Carole Rutherford and Sarah Johnson both parents with two autistic children. AIM is a national support and campaign group dedicated to raising awareness of autism and how it impacts on the lives of those living with the condition. AIM is in touch with parents, carers and adults with autism all over the UK via our many Internet support and campaign groups and also via local support groups.

While AIM welcomes the opportunity to respond to the consultation regarding the statutory guidance for local authorities and NHS organisations to support implementation of the autism strategy we are disappointed with both the statutory guidance and more importantly the wording in the strategy which we believe is both weak and vague leaving it open to misinterpretation by local authorities.

Because the wording of the strategy itself is so vague the guidance needs to be worded as strongly as possible to ensure that local authorities and health authorities know exactly what is expected of them and to enable adults with autism and their parents and carers to be able to use the guidance if they need to, to hold their local authorities and health authorities to account.

Chapter 1: The provision of services for the purpose of diagnosing autistic spectrum conditions in adults

Question 1.1: Do you think that this guidance explains the responsibilities that local authorities NHS bodies and NHS foundation Trusts have for adults with autism around diagnosis?

No The guidance does not make it clear who has responsibility for diagnosis and assessment. It is currently considered to be good practice for a multi-disciplinary team to carry out an assessment leading to a diagnosis. Each part of the team brings with it its own level of expertise.

AIM believes that it would be detrimental to the process of diagnosis to allow professionals who do not have a high level of expertise and knowledge to lead on diagnosis. The pathway to diagnosis needs to be made much clearer in this chapter. AIM does not feel that the pathway is clearly defined at the moment. GPs and other services need a clear direction of the pathway they must take when referring an adult for a diagnostic assessment. A clearly defined pathway is not only essential for professionals but also for parents, carers and adults with autism.

Question 1.2 If not, what changes would you propose?

AIM is concerned that the change over from PCTs to GP consortia will impact on the implementation of the strategy. 80% of GPs admitted in a survey carried out by the National Audit Office last year that they did not have enough knowledge or understanding of autism and often had very little understanding or awareness regarding diagnosis. A lack of knowledge and understanding will impact negatively on any referral pathway unless GPs are better trained to understand the condition.

AIM is also concerned about the role of Local Authorities in appointing a diagnostic and assessment lead. It is questionable that anyone within a Local Authority would have the necessary level of expertise to appoint a team of people whose primary function has nothing to do with local authority services and everything to do with health. It must be made clear to every Local Authority that they must appoint a lead professional who will develop diagnostic services for adults with autism.

Question 1.3 Is there anything else to add that would make a difference?

Signposts to services for adults must be clearly defines and made readily available to any adult or their parents of carers who have had a diagnosis and might be in need of provision. AIM does not feel that the guidance clearly defines the duties of local bodies and what is expected of them. All adults should be able to access services via their NHS Trusts.

Question 1.4 Do you have any other comments?

Diagnosis is not the end of the road for someone with an autistic spectrum condition. It must be the gateway to the services, provision and support that an adult may well need for the rest of their lives.Every local body must have a clear path way to support and services provision for adults once their diagnosis has been confirmed.

Parents and carers often play an important role in the lives of adults with autism and their needs must also be considered. They should also have a clearly mapped out route to any support that they themselves might require to help themselves or their adult children.Autism is quite often not a stand alone condition and it is possible that some adults who have sought a diagnosis will have co-morbidities running alongside their autism. These co-morbidities need to be recognised and included.

As we have 80% of GPs who responded to the National Audit Office Survey last year regarding autistic spectrum conditions believe they lack knowledge and understanding of autism and do not keep a register of patients diagnosed with autism. Seven out of ten GPs (71%) do not provide specific ongoing support, monitoring or condition management for patients diagnosed with autism.

Most GPs who responded to the survey said that they are not confident that their patients are receiving appropriate and adequate care. For the Implementation Strategy to suggest that GPs could diagnose and autistic spectrum condition does not make sense and is not a viable option.

Question 1.4 Do you have any other comments on diagnosis?

It is vitally important that an adult who may well have been seeking a diagnosis for some years finds the path way to diagnosis clear, precise and easy to navigate. To ensure that this happens all of the professionals involved in the pathway to diagnosis must be correctly and appropriately trained.

Chapter 2: The identification of adults with autism Training is essential for any professional who is involved in the pathway from identification to diagnosis. These professionals must be correctly and appropriately trained in autism and not just those professionals who work in the field of health or social care.

Questions 2.1-2.3: Do you think that this guidance explains the responsibilities that local authorities NHS bodies and NHS foundation Trusts have for adults with autism around identification? If not, what changes would you propose?Is there anything else to add that would make a difference?

The wording in this chapter is far too weak and needs to be amended. There need to be clearly defined expectations for NHS Trusts and Local Authorities regarding the training they must provide to their key professionals. This is especially so for GPs and social workers who must have training to enable them to signpost post adults on to the diagnosis and assessment pathway. It needs to be specified what should happen once someone has been identified as possibly having an autistic spectrum condition. Asking a local body to ‘consider’ what autism awareness training is made available, is not clearly defining the expectation that all frontline staff will have to be appropriately and correctly trained.

Question 2.4 Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

No AIM does not think that the section of the guidance is clearly worded. We are concerned that health and social care professionals will not clearly understand what is required from them.Anyone who becomes involved in the assessments must be correctly and appropriately trained.

Question 2.5 Do you have any other comments on identification?

While the strategy states that it recognises that the biggest barrier to identification of autism is a lack of awareness amongst frontline staff, it is difficult to see how the 500,000 pound that comes attached to the strategy for awareness raising training is going to be enough to ensure that all of the key frontline professionals are correctly and appropriately trained. Training for GPs is now absolutely essential given that from 2013 GP consortia will replace Primary Care Trusts.

Chapter 3: The assessment of the needs of adults with autism for relevant services

AIM agrees that identification or a diagnosis of autism is not enough and that a diagnosis should always leads to a person-centred assessment of need for care and support. AIM is concerned that the professionals who would carry out any such assessments may not themselves be appropriately trained and this could lead to a lack of appropriate support being offered or no support at all.

There needs to be a section in this chapter that underlines the needs for anyone who is likely to be involved in a post diagnosis assessment for support to be correctly and appropriately trained. It should also be made clear that a diagnosis is not necessary for an assessment to take place.

Question 3.1 Do you think that this guidance explains the responsibilities that local authorities NHS bodies and NHS foundation Trusts have for adults with autism around assessment?

While the responsibilities are explained AIM feels that they may not be clearly outlined for others to understand what they are.

Question 3.2-3.3 If not, what changes would you propose?Is there anything else to add that would make a difference?

There is no mention of access to services following an assessment and this need to be included.It would be helpful if at the point of diagnosis the adult was offered a key worker for at least the first twelve months post diagnosis. This key worker could then help the adult to access the support assessments and services that are available.In line with the recommendations made by the National Audit Office it needs to be made clear in the guidance that anyone who is involved in the assessment of an adult with autism or will be supporting an adult post diagnosis should have been correctly and appropriate trained.

AIM would like to see it clearly written into the guidance that IQ should not be taken as an indicator that an adult with a diagnosis of autism will not require either an assessment for support or actual support.

Question 3.4 Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

NO again the wording is far too weak and needs to be much stronger.3.5 Do you have any other comments on assessment?There is no mention of co-morbidities mentioned in this chapter and they must not be overlooked.

Chapter 4Planning in relation to the provision of relevant services to young people with autism as they become adults

An assumption is made that children with autism and their families and carers will usually have had access to support that helps them achieve and be included and that without effective transition planning, this support will disappear once people with autism reach adulthood – leaving them isolated at this critical point.

AIM would like this to be reworded as AIM is aware that many children and families who are living with autism are unable to access any support during the childhood years. This is usually because the child has Aspergers Syndrome or High Functioning Autism and does not therefore meet the criteria for provision or support services. Aim fully supports the need for effective transition planning and we would like to see this planning include all of the children with Aspergers Syndrome and High Functioning Autism who are currently excluded because of their IQ. Transition can be a difficult time for any child on the autistic spectrum regardless of their IQ.

This Chapter must address this issue because there are children who do not have a statement of special educational needs who are excluded from the transitioning process because they do not have a statement.

4.1: Do you think that this guidance explains the responsibilities that local authorities NHS bodies and NHS foundation Trusts have for adults with autism around transition? NO the chapter does not cover all of the statutory duties that are already in existence and this urgently needs to be addressed.

AIM also believe that there needs to be additional guidance wrapped around transition that will place a greater emphasis on the need for local bodies to address the challenges that a child going through a period of transition often faces.

4.2 If not, what changes would you propose?

You can not put a fixed period of time on how long a transition should take because every person with autism is different and so the transitional planning should warp around the individual and not a fixed transitional period of time.

4.3 Is there anything else to add that would make a difference?

Joined up working and thinking practices are essential throughout the whole process of transition and this needs to be clearly underlined.It is important that the needs of an adult are recorded even if there are no appropriate services that are available to offer that person.

4.4 Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

No again the wording is far too weak.

4.5 Do you have any other comments on transition?

AIM believes that a transition plan needs to wrap around the individual and not the system. We would like this to be clearly defined in the guidance. A firm diagnosis of autism should trigger a transition plan.

Chapter 5Planning in relation to the provision of services to adults with autism

While it is essential for local areas to collect data to ensure that they commission and supply services for adults with autism AIM is concerned by some of the wording used in this chapter that we believe might be difficult for newly diagnosed adults with autism and their parents and carers to easily understand.

AIM has been campaigning for Autism Partnership Board since April 2009 and we will continue to do so. AIM firmly believes that the autism strategy requires a vehicle to drive it forward if it is to succeed in transforming the lives of those who are living with autism. Autism Partnership Boards which would create a focal point for autism and raise awareness of the needs of a complex condition that often requires personalised and specific provision, services and support.

5.1 Do you think that this guidance explains the responsibilities that local authorities NHS bodies and NHS foundation Trusts have for adults with autism around planning?

No again far too weak. The wording needs to be much stronger.

5.2 If not, what changes would you propose?

AIM does not believe that there is a gap in provision that mental health and learning disability services need to provide. We believe that there is a gap that requires autism specific services. This means that autism specific services should be commissioned so that the correct provision wraps around the individual with autism and that there are no gaps in provision.

The National Audit Office pointed out in their report last year that whilst autism specific services might initially prove to be costly the likelihood was that they would over time decrease the amount of money that would need to be spent on autism.

AIM believes that unless autism specific services are developed we will continue to fail individuals with autism.Every Local Authority must have a lead officer whose sole responsibility is autism.Individuals with autism and parents and carers must also be actively and fully involved not only in the commissioning of services but also in any decision making process that will impact on their lives.

5.3 Is there anything else to add that would make a difference?

Trained advocates should be available to all adults with autism. This is essential now that adults with autism are going to have their entitlement to Incapacity Benefit which is in the process of becoming Employment Support Allowance assessed and from 2013 will have to be reassessed for Disability Living Allowance. Where no trained advocates are available parents should be allowed to advocate for their adult children without them being considered to be overly involved in the lives of their adult children.

5.4 Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

No the language used need to be much stronger with expectations on statutory bodies clearly underlined.

5.5 Do you have any other comments on planning?

Reasonable adjustments for people with autism need to be clearly defined and specified. The personalisation of budgets for adults with autism is not overly successful at the moment and so their needs to be a clearly defined pathway which would include access to advocates, information, and advice in place.

Chapter 6: The training of staff who provide services to adults with autism

As this Chapter seeks to join together all of the action points in other chapters of the strategy, it needs to be strengthened and made clear that the appropriate and relevant training for professionals is essential to ensure that adults with autism are able to access the support that they require.

GPs must be at the forefront for awareness raising training as should any professional who will be involved in assessments..

6.1 Do you think that this guidance explains the responsibilities that local authorities NHS bodies and NHS foundation Trusts have for adults with autism around planning?

No. Generally the language used throughout this document is far too weak The wording is not specific enough to make clear what the duty for statutory bodies is. The importance of training for frontline professionals needs to be clearly underlined throughout this document.

6.2 If not, what changes would you propose?

Training needs to be specified, quantified and autism specific. Training also needs to be mandatory for frontline professionals especially GPs. Pathways to access training should be identified and details of how to access training should be clearly outlined.

6.3 Is there anything else to add that would make a difference?

AIM believes that because autism is such a complex condition it is essential that all frontline professional need to be correctly and appropriately trained. A lack of understanding and awareness of the condition can have a lasting and negative impact on the adult with autism.

Training must include all of the co-morbidities that can exist with autism. Training must be on going and there must be some method of evaluating the quality of the training being offered and given.

6.4 Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

No, this section is not worded clearly.

6.5 Do you have any other comments on training?

Training and the quality of that training will be the one thing that underpins the strategy, and the one thing on which the implementation of the strategy will stand of fall. Without the correct and appropriate training adults with autism will continue to struggle to obtain a diagnosis and will fail to secure the appropriate support and provision that they require to live a fulfilling and rewarding life.

Autism is a vast spectrum and is often an invisible disability which can be very difficult to understand. It is therefore essential that we do not see a ‘one size fits all’ training package rolled out. Incorrect or inappropriate training can have a damaging and lasting effect on the lives of those who are living with the condition.

Chapter 7Local arrangements for leadership in relation to the provision of services to adults with autism

Someone needs to take responsibility at a local level for adults with autism. The best and most effective way for this to happen is to ensure that every locality has a named lead officer whose sole responsibility is autism. That person would be charged with setting up and implementing Autism Partnership Boards and ensuring that all of the main players, including adults with autism and parents and carers meet on a regular basis to work on the best way forward for adults living with autism.

7.1 Do you think that this guidance explains the responsibilities that local authorities NHS bodies and NHS foundation Trusts have for adults with autism around leadership?

No The language used should be clearer and stronger.

7.2-7.3 and 7.5 If not, what changes would you propose? Is there anything else to add that would make a difference?

Do you have any other comments on leadership?

The creation of Autism Partnership Boards are in our opinion essential and would ensure that meaningful engagement takes place between all frontline professionals and also with adults with autism and parents/carers. This should be set out in the guidance. 7

.4 Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

As with all of the other chapters this chapter need to be worded in a much stronger way. AIM believes that the best way for the implementation of the strategy to success if to ensure that what is required of local bodies and lead professionals is clearly specified within every chapter.