Autism self-assessment exercise 2018: annexes

Question 1

Annex 1: The 15 priority challenges in Think Autism

Accepted Answer

I want to be accepted as who I am within my local community. I want people and organisations in my community to have opportunities to raise their awareness and acceptance of autism.

I want my views and aspirations to be taken into account when decisions are made in my local area. I want to know whether my local area is doing as well as others.

I want to know how to connect with other people. I want to be able to find local autism peer groups, family groups and low-level support.

I want the everyday services that I come into contact with to know how to make reasonable adjustments to include me and accept me as I am. I want the staff who work in them to be aware and accepting of autism.

I want to be safe in my community and free from the risk of discrimination, hate crime and abuse.

I want to be seen as me and for my gender, sexual orientation and race to be taken into account.

I want a timely diagnosis from a trained professional. I want relevant information and support throughout the diagnostic process.

I want autism to be included in local strategic needs assessments so that person-centred local health, care and support services, based on good information about local needs, is available for people with autism.

I want staff in health and social care services to understand that I have autism and how this affects me.

I want to know that my family can get help and support when they need it.

I want services and commissioners to understand how my autism affects me differently through my life. I want to be supported through big life changes such as transition from school, getting older or when a person close to me dies.

I want people to recognise my autism and adapt the support they give me if I have additional needs such as a mental health problem, a learning disability or if I sometimes communicate through behaviours which others may find challenging.

If I break the law, I want the criminal justice system to think about autism and to know how to work well with other services.

I want the same opportunities as everyone else to enhance my skills, to be empowered by services and to be as independent as possible.

I want support to get a job and support from my employer to help me keep it.

Question 2

Annex 2: questions used in the 2018 self-assessment exercise

Accepted Answer

Local context and senior leadership

How many Clinical Commissioning Groups do you need to work with to implement the Adult Autism Strategy in your local authority area?

Are you working with other local authorities to implement part or all of the priorities of the strategy?

Planning

Does your area have a designated strategic lead for autistic adult services, for example, an autism lead role? If yes:

what is the name of your autism lead?
what is the job title of your autism lead?
what is the email address of your autism lead?
is this your strategic joint commissioner?
how much time is allocated to this autism role in this person’s work plan?

What are the responsibilities of the joint commissioner/senior manager responsible for services for autistic adults?

How much time is allocated to this autism role in this person’s work plan?

Does your area have a separate operational lead for services for autistic adults? If yes;

what is the name of your operational autism lead?
what is the job title of operational autism lead?
what is the email address of operational autism lead?

Is autism included and explicitly considered in the local JSNA?

red: no
amber: steps are in place to include in the next JSNA
green: yes

Does your local JSNA specifically consider the needs of autistic children and young autistic people?

Do you collect data on those people referred to and/or accessing social care and/or health care and does your information system report data on people with a diagnosis of autism, including as a secondary condition, in line with the requirements of the social care framework?

red: data recorded on autistic adults is sparse and collected in an ad hoc way
amber: data recorded annually but there are gaps identified in statutory health and/or social care services data (some data sharing exists between services)
green: an established data collection and sharing policy inclusive of primary care, health provision, adult social care, schools or local education authority and voluntary sector care providers is in place and used regularly

Do you collect data on the total number of people currently known to adult social services with a diagnosis of autism (whether new or long-standing), who meet eligibility criteria for social care (irrespective of whether they receive any)?

How many people assessed as having autism meet social care eligibility criteria?

How many people assessed as having autism and learning disabilities meet social care eligibility criteria?

How many people assessed as having autism, who are also in receipt of treatment for mental health problems, meet social care eligibility criteria?

Does your Local Joint Strategic Commissioning Plan (or other statement of joint commissioning intentions such as Health & Wellbeing Strategy, Autism Strategy or Market Position Statement etc., reflect local data and needs of autistic people?

Do you publish any data other than that collected in the JSNA?

Taking together any data in the JSNA and any other sources referenced here, how adequately do current collections of data sources service the requirements of planning and commissioning?

red: no work underway
red to amber: collection of limited data sources
amber: have made a start in collecting data and have plans to progress
amber to green: have started to collect data and whilst not comprehensive, consider this is an accurate reflection
green: information from GPs, Schools or Local Education Authority, voluntary sector, providers, assessments and diagnosis are all collected and compared against the local population prevalence rate

Are your Local Authority and local Clinical Commissioning Group(s) (including the support service) both engaged in the planning and implementation of the strategy in your local area?

red: none or minimal engagement between the LA and CCG(s) in planning and implementation
amber: representative (s) from CCG(s) and or the support service sits on autism partnership board or alternative and are in regular liaison with the LA about planning and implementation
green: CCGs are fully engaged and work collaboratively to implement the NHS responsibilities of the strategy and are equal partners in the implementation of the strategy at a local level

Do you have a local autism partnership board (as described in section 4 of the Statutory Guidance) or equivalent in place which meets at least once a year and includes representatives of at least Adult Social Care and the Clinical Commissioning Group(s)?

How have you and your partners engaged autistic people and their families and carers in planning?

red: minimal autism engagement work has taken place
amber: some autism specific consultation work has taken place. Autism partnership board is regularly attended by one autistic person and one parent/carer of an autistic person who is meaningfully involved
green: a variety of mechanisms are being used so a cross-section of autistic people are meaningfully engaged in the planning and implementation of the Adult Autism Strategy and autistic people are thoroughly involved in the autism partnership board

Have reasonable adjustments been made to general council services to improve access and support for autistic people?

red: only anecdotal examples
amber: steps are in place to include in the next JSNA
green: clear council policy as in Amber and evidence of widespread implementation in relation to needs of autistic people

In your area have reasonable adjustments been promoted to enable autistic people to access NHS services including primary care or GP services, mental health and acute services?

red: little evidence of reasonable adjustments in NHS services, to improve access for autistic people
amber: some examples of reasonable adjustments being made to NHS services to improve access for autistic people, across a small range of services
green: evidence of implementation of reasonable adjustments for autistic people in a wide range of NHS services

In your area have reasonable adjustments been promoted to enable autistic people to access health and social care information, support and advice?

red: little evidence of reasonable adjustments to health and social care information, support and advice services, to improve access for autistic people
amber: some examples of reasonable adjustments being made to health and social care information, support and advice services, across a small range of services
green: evidence of implementation of reasonable adjustments for autistic people in a wide range of health and social care information, support and advice services

In your area have reasonable adjustments been promoted to enable autistic people to access other public services including colleges and universities, libraries and all forms of public transport?

red: little evidence of reasonable adjustments in other public services, to improve access for autistic people
amber: some examples of reasonable adjustments being made to public services to improve access for autistic people, across a small range of public services
green: evidence of implementation of reasonable adjustments for autistic people in a wide range of publicly provided and commercial public services

Is the local authority or its partners encouraging autistic people to take part in culture and leisure activities, or physical fitness programmes and private sector services such as shopping?

red: local authority and or its partners cannot identify substantial actions to encourage autistic people to take part in culture or leisure activities, or physical fitness programmes and private sector services such as shopping
amber: a few examples of the local authority and/or its partners encouraging autistic people to take part in culture or leisure activities, or physical fitness programmes and private sector services such as shopping
green: local authority and/or its partners have a substantial programme of work to encourage autistic people to take part in culture or leisure activities, or physical fitness programmes and private sector services such as shopping

How do your transition processes from children/young people’s services to local adult services take into account the particular needs of young autistic people?

red: no consideration of the needs of young autistic people: no data collection; no analysis of need; no training in young people’s services
amber: transition process triggered by parental request - training in some but not all services designed for use by young people, and data collection on young autistic people and/education health and care (EHC) plans for young people with autism identified as a primary or secondary need
green: transition process automatic and training inclusive of young people’s services - analysis of the needs of young autistic people, including those without education health and care (EHC) plans identifying autism as a primary or secondary need, and specialist commissioning where necessary, and the appropriate reasonable adjustments made

How many autistic children/young people were in Year 10 in the school year 2017 to 2018?

How many autistic children/young people were in Year 11 in the school year 2017 to 2018?

How many autistic children/young people were in Year 12 in the school year 2017 to 2018?

How many autistic children/young people were in Year 13 in the school year 2017 to 2018?

How many autistic children/young people have completed the transition process in the school year 2017 to 2018?

How does your planning take into account the particular needs of autistic adults age 65 and older?

red: no consideration of the needs of autistic people aged 65 and older and no data collection
amber: some work in needs assessment, data collection and/or service planning for autistic people aged 65 and older
green: analysis of the needs of the population of people aged 65 and older inclusive of autism and specialist commissioning where necessary and the appropriate reasonable adjustments made

How do your planning and implementation of the strategy take into account the particular needs of autistic women?

How do your planning and implementation of the strategy take into account the particular needs of autistic adults in BME communities?

Do your local hate crime statistics specifically identify autistic people?

Training

Have you got a multi-agency autism training plan?

What staff groups and agencies are included?

What training is included in the multi-agency training plan and at which levels for which staff groups?

Is autism awareness training being/been made available to all staff working in health and social care as directed in Chapter 1 of the Statutory Guidance?

red: historical workforce training data available from statutory organisations on request. Not yet devised an autism training plan/strategy
amber: client facing staff identified as a priority. Good range of local autism training that meets NICE guidelines - and some data on take up - workforce training data available from statutory organisations on request - autism training plan/strategy near completion
green: focus on all staff - comprehensive range of local autism training that meets NICE guidelines and data on take up - workforce training data collected from all statutory organisations and collated annually, gaps identified and plans developed to address them - autism training plan/strategy published

Do you record uptake levels of autism awareness training for Local Authority and/or NHS staff working in health and social care?

Please outline scope of staff considered eligible for autism awareness training and the agreed frequency for training.

If yes, what is the number of staff who are eligible for awareness training?

If yes, what is the number of eligible staff who are up to date with training?

Specify whether autistic self-advocates and/or family carers of autistic people are included in the design of training and/or whether they have a role as trainers. If the latter specify whether face-to-face or on video/other recorded media.

Is specific training provided to staff that carry out statutory assessments on how to make adjustments in their approach and communication?

red: specific training is either not being offered or uptake by staff has not yet reached 50% of those for whom it is intended
amber: at least 50% of assessors have attended specialist autism training
green: more than 75% of assessors have attended specialist autism training specifically aimed at applying the knowledge in their undertaking of a statutory assessment, for example, applying the Care Act

Do you have specific training that focusses on autistic adults over the age of 65?

Do Clinical Commissioning Group(s) ensure that all primary and secondary healthcare providers include autism training (at levels outlined in the statutory guidance) as part of their ongoing workforce development?

Please comment further on any developments and challenges, commenting specifically about GPs and secondary care medical staff.

Criminal Justice services: Do staff in the local police service engage in autism awareness training?

Criminal Justice services: Do staff in the local court services engage in autism awareness training?

Criminal Justice services: Do staff in the local probation service engage in autism awareness training?

Diagnosis led by the local NHS Commissioner

Have you got an established local autism diagnostic pathway?

red: no local diagnosis service planned or established, no clear transparent pathway to obtaining a diagnosis for Adults identified and only ad-hoc spot purchasing of out of area services, NICE guidelines are not being followed.
amber: local diagnosis pathway established or in process of implementation/sign off but unclear referral route, a transparent but out of locality diagnostic pathway is in place, some NICE guidelines are being applied
green: a local diagnostic pathway is in place and accessible and GPs are aware and involved in the process, wait from referral for a diagnosis and initial assessment is less than 3 months, NICE guidelines are implemented within the model

Does the pathway meet autistic people’s needs regardless of whether or not the person meets learning disability criteria?

If you have got an established local autism diagnostic pathway, when was the pathway put in place?

In the year to the end of March 2018, how many people were referred out of area for diagnosis, despite a local diagnostic pathway being in place?

In weeks, how long is the average wait between referral and assessment? Please note:

this should include all people referred irrespective of prioritisation streams
the waiting time starts when the first referral about an individual is received by the diagnostic service. It finishes either when the person is first seen in clinic or when the person withdraws from the list by notifying the service that they do not want an assessment
in this question you should report the average waiting time for people assessed in the twelve months to March 2018.

When will your area be able to meet NICE recommended [QS51] waiting time and expect to be able to keep within them?

red: we do not anticipate being able to reach NICE recommended waiting times sustainably by March 2019
amber: we anticipate meeting NICE recommended waiting times by March 2019and to be able to sustain this thereafter
green: our area already meets NICE recommended waiting times

Briefly note any contingency arrangements you have in place to manage short term increases in rate of referral to diagnostic services.

How many people have been referred for an assessment but have yet to receive a diagnosis? Please note:

in this question you should report the number who have started but not finished a referral waiting time at a single point in time
the best point to choose for consistency with question 66 would be 31 March 2018 but another specific date within 3months would be satisfactory

In the year to the end of March 2018 how many people have received a diagnosis of an autistic spectrum condition?

Of the people who received a diagnosis in the year to end March 2018, how many:

have completed all relevant assessments and are now receiving any support identified as relevant?
have completed all relevant assessments but are awaiting some or all of the support identified as relevant?
have completed all relevant post diagnostic and care assessments and are not considered to need specific support at the present time?
have not yet completed all relevant assessments of their support needs?
do not meet Care Act eligibility criteria?

How would you describe the local diagnostic pathway, such as: integrated with mainstream statutory services with a specialist awareness of autism for diagnosis or a specialist autism specific service?

In your local diagnostic pathway does a diagnosis of autism automatically trigger an offer of a care assessment (or re-assessment if the person has already had a current Care Act assessment)? How is this handled with people unlikely to be eligible for care and support under the Care Act?

Can people diagnosed with autism and a learning disability access post diagnostic specific or reasonably adjusted psychology assessments?

Can people diagnosed with autism and without a learning disability access post-diagnostic specific or reasonably adjusted psychology assessments?

Can people diagnosed with autism and a learning disability access post diagnostic specific or reasonably adjusted speech and language therapy assessments?

Can people diagnosed with autism and without a learning disability access post-diagnostic specific or reasonably adjusted speech and language therapy assessments?

Can people diagnosed with autism and a learning disability access post diagnostic specific or reasonably adjusted occupational therapy assessments?

Can people diagnosed with autism and without a learning disability access post diagnostic specific or reasonably adjusted occupational therapy assessments?

red: availability patchy or mainly generic services, with a small number of reasonably adjusted services
amber: available everywhere, mainly reasonably adjusted services with some access to autism specific services (when necessary) and some generic services.
green: all services are reasonably adjusted to provide access to post diagnostic specialist assessments, access to autism-specific services is also available when necessary

Is post-diagnostic adjustment support available with local clinical psychology or other services for those people diagnosed with autism and a learning disability?

Is post-diagnostic adjustment support available with local clinical psychology or other services for those people diagnosed with autism and without a learning disability?

Do mental health crisis services in your area routinely anticipate and provide for the mental health crisis needs of autistic people but without a learning disability?

red: mental health crisis services do not provide for people with crises that relate to autism in the absence of acute mental illness
amber: mental health crisis services will and do respond to mental health crises in autistic people whether or not these involve an acute mental illness
green: mental health crisis services will and do respond to mental health crises in autistic people whether or not these involve an acute mental illness (in addition staff have specific training about the needs of autistic people and specialised mental health support has been commissioned for this group and is easily available within timescales relevant for crisis work)

Care and support

Of those adults who were assessed as being eligible for adult social care services and who are in receipt of a personal budget, how many have a diagnosis of autism both with a co-occurring learning disability and without?

What is the number of adults assessed as being eligible for adult social care services who have a diagnosis of autism and in receipt of a personal budget?

What is the number of those reported in question 83 above who have a diagnosis of autism but not learning disability?

What is the number of those reported in question 83 above who have both a diagnosis of autism and learning disability?

Do you have a single identifiable contact point where autistic people whether or not in receipt of statutory services can get information signposting autism-friendly entry points for a wide range of local services:

general entry point
single point of access with autism specific reasonable adjustments at entry point
autism specific access point

Do you have a recognised pathway for autistic people who do not have a learning disability to access a care assessment and other support?

Do you have a programme in place to ensure that all advocates working with autistic people have training in their specific requirements?

red: no programme in place
amber: programme in place, not all advocates are covered
green: programme in place, all advocates are covered

Do autistic adults who could not otherwise meaningfully participate in needs assessments, care and support planning, appeals, reviews, or safeguarding processes have access to an appropriately trained advocate?

red: no autism specific advocacy service available
amber: yes, local advocacy services are working at becoming autism-aware
green: yes, there are mechanisms in place to ensure that all advocates working with autistic adults have received specialist autism training

Are low level interpersonal/preventative support opportunities available in your area? See Think Autism (2014), para 3.2 and Progress Report on Think Autism (2016), Section 4.

Can autistic people access other types of support if they are not eligible under the Care Act or not eligible for statutory services?

How would you assess the level of information about local support across the area being accessible to autistic people?

red: information about support services for autistic people is either seriously incomplete or not easily accessible
amber: moderate level of information available about support services for autistic people which is either incomplete or not readily accessible to autistic people
green: readily accessible information (as required in the statutory guidance and the Accessible Information Standard) available on all relevant support services available for autistic people

Where appropriate, are carers of people assessed as having autism and eligible for social care support offered carers assessments?

red: carers assessments are not consistently routinely offered
amber: where carers are identified in the course of assessments of autistic people, they are routinely offered carers assessments
green: upon assessment of autistic people, carers are routinely identified and offered a carers assessment, carers can also self-identify and request a carers assessment, information about how to obtain a carers assessment is clearly available

Access to adult mental health services: Do autistic people or carers report difficulty in accessing local mental health services after their diagnosis has been made?

Housing and Accommodation

Does the local housing strategy and/or market position statement specifically identify autism?

red: needs of autistic people (as distinct from needs of people with other disabilities) not specifically mentioned in housing strategy and or market position statement (for two tier authorities in any district council areas).
amber: housing requirements of autistic people are specifically mentioned but not to level described in Green rating (for two tier authorities not in all district council areas).
green: comprehensive range of types of housing need for autistic people considered including estimates of numbers of placements required in each category (for two tier authorities and in all district council areas)

Do you have a policy of ensuring that the frontline service of social housing providers all have at least one staff member who has training in autism to help people make applications and fill in necessary forms?

Employment

How have you promoted in your area the employment of autistic people?

red: no work in this area has been provided or minimal information not applied to the local area specific to autism, local employment support services are not trained in autism or do not routinely consider the support needs of the individual taking into account their autism and local job centres are not engaged
amber: Autism awareness is delivered to employers on an individual basis. Local employment support services include autism. Some contact made with local job centres
green: Autism is included within the Employment or worklessness Strategy for the Council or included in a disability employment strategy, focused autism-trained employment support, proactive engagement with local employers specifically about employment of autistic people including retaining work, engagement of the local job centre in supporting reasonable adjustments in the workplace via Access to work

Do transition processes for autistic young people to adult services have an employment focus?

red: transition plans do not include specific reference to employment or continued learning
amber: transition plans include reference to employment or activity opportunities
green: transition plans include detailed reference to employment, access to further development in relation to individual’s future aspirations, choice and opportunities available

Does the local authority offer tailored support or programmes to help autistic people enter employment or self-employment, including those with SEND and those with EHC plans?

red: no tailored support programmes currently provide support specifically for young autistic people
amber: local commissioning of these schemes specifies for at least some they should specifically address the needs of young autistic people
green: local commissioning of these schemes specifies for at least some they should specifically address the needs of young autistic people

Does the local authority monitor the employment outcomes of autistic people who have received support or participated in programmes? (local commissioning of these schemes specifies for at least some they should specifically address the needs of young autistic people)

Criminal Justice System

Are the Criminal Justice Services (police, probation and, if relevant, court services) engaged with you as key partners in planning for autistic adults?

red: minimal or no engagement with the criminal justice services
amber: discussions between local authority adult social care services and criminal justice service agencies are continuing and representatives from criminal justice service agencies sit on autism partnership board or alternative
green: as amber but: autistic people are included in the development of local criminal justice diversion schemes, representative from criminal justice services agencies regularly attend meetings of the autism partnership board or alternative, there is evidence of joint working such as alert cards or similar schemes in operation and there is evidence of joint or shared training

Is access to an appropriate adult service available for autistic people in custody suites and nominated ‘places of safety?

red: there is not reliable access to an appropriate Adult service
amber: yes, but appropriate adults do not necessarily have autism awareness training
green: yes and these have all had autism awareness training

Local innovations

Please outline any innovations you have put in place as part of the Transforming Care Programme which are helping provide homes in the community for autistic people who until recently were long stay residents in psychiatric in-patient units.

If you wish, describe briefly (up to 1500 characters) one initiative of your council, relating to the provision of care, support or development of independence for autistic people, which you think has been successful.
What initiatives have been taken in your area to encourage private sector organisations to improve accessibility, employment opportunities or address other important issues for autistic people.

Completion details

Which of the following types of partner were involved in the completion of this self-assessment:

local authority Adult Social Services
local authority Department of Children’s Services
local authority authority
health and wellbeing board
local authority Public Health Department
clinical commissioning Group
primary healthcare providers
secondary healthcare providers
employment service
business sector
police
probation service
court ervice
prisons location in the area
local charitable groups
voluntary groups
self-advocacy groups
interest groups
autistic adults
informal carers, family, friends of autistic people

Has your local areas response been discussed at a meeting of your local autism partnership board with representatives of both autistic people and family carers present?

Who signed off this self-assessment:

Director of Adult Social Services (please name)
Director of Public Health (please name)
CCG Chief Operating Officer (please name)

Was this self-assessment signed off by the Local Autism Programme Board?

Question 3

Annex 3. The 54 ‘movement’ questions

Accepted Answer

Context and senior leadership

Does your area have a designated strategic lead for autistic adult services, for example, an Autism Lead Role?

Does your area have a separate operational lead for services for autistic adults?

Planning

Is autism included and explicitly considered in the local JSNA?

Does your local JSNA specifically consider the needs of autistic children and young autistic people?

Do you collect data on those people referred to and or accessing social care and or health care and does your information system report data on people with a diagnosis of autism, including as a secondary condition, in line with the requirements of the social care framework?

Do you collect data on the total number of people currently known to adult social services with a diagnosis of autism (whether new or long-standing), who meet eligibility criteria for social care (irrespective of whether they receive any)?

Does your Local Joint Strategic Commissioning Plan (or other statement of joint commissioning intentions such as Health & Wellbeing Strategy, Autism Strategy or Market Position Statement), reflect local data and needs of autistic people?

Taking together any data in the JSNA and any other sources referenced here, how adequately do current collections of data sources service the requirements of planning and commissioning?

Are your Local Authority and local Clinical Commissioning Group(s) (including the support service) both engaged in the planning and implementation of the strategy in your local area?

Do you have a local autism partnership board (as described in section 4 of the Statutory Guidance) or equivalent in place which meets at least once a year and includes representatives of at least Adult Social Care and the Clinical Commissioning Group(s)

How have you and your partners engaged autistic people and their families and carers in planning?

Have reasonable adjustments been made to general council services to improve access and support for autistic people?

In your area have reasonable adjustments been promoted to enable autistic people to access NHS services including primary care or GP services, mental health and acute services?

In your area have reasonable adjustments been promoted to enable autistic people to access health and social care information, support and advice?

In your area have reasonable adjustments been promoted to enable autistic people to access other public services including colleges and universities, libraries and all forms of public transport?

How do your transition processes from children or young people’s services to local adult services take into account the particular needs of young autistic people?