Consultation response no:

Do you agree that a definition of ‘autism spectrum disorder’ should appear on the face of the Bill?

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2.

No – the content of the Bill itself will define what is required – autism and ASD are seen as the same. However, if Neurodevelopmental conditions are included, then this may require definition of what this is and will cover. 

The act as introduced added the phrase (b) for the purpose of this Act, This has the potential to add to confusion as it implies that an alternative neurodevelopmental condition may be considered as autism only for the purpose of this act and not with respect to other statutory instruments which would be unchanged. 

Consultation response no:

Do you agree that using the WHO ICD-11 definition in the draft Bill, together with the power for Welsh Ministers to include other neurodevelopmental disorders, is the right approach?

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2.

No

This approach indicates that the Bill if passed will in future provide challenge for what is and what isn’t included. Currently there is a clear notion of what autism does and does not include, and as such, services are designed around these needs to specifically meet those with the condition.

Adding in Neurodevelopmental Disorders is a significant change in the list including as well as autism, ADHD, intellectual disability, communication disorders motor disorders, pathological demand avoidance etc. Whilst this is more inclusive, and supports alignment of the new ND teams and the IAS, this implies that these two services require legislation to work together across the lifespan.

This significantly extends the Bill from its original focus on autism.  It also has the potential for further conditions to be added in the future making planning for need based around populations and prevalence very difficult, and could potentially increase legal challenge in the delivery of services, where definitions are not clear.

Listing conditions also has the potential to further medicalise an approach that should be seeking to enable children, families and adults to lead fulfilled lives that support wellbeing. 

For those experiencing other neurodevelopmental disorders, including them within legislation and a more strategic approach is likely to be welcome.

However, there are a number of other identified groups which will become excluded who will not welcome the Bill because of preferential set of legal terms which exclude these other groups which in itself is discriminatory.

Therefore, a preferred option would be to suggest additions to the SS&WB Act, which could provide a specialist overview for autism, but in its nature is an inclusive legislative all age Act. 

The act as introduced retained this section providing a power for Welsh ministers to introduce other conditions if necessary.   This continues to be a section with the potential to lose the focus and purpose of the proposed Bill turning it into a pan-disability piece of legislation, which is effectively what the Social Services and Well Being Act is.

Consultation response no:

Are the “relevant bodies” in section 7 of the draft Bill the appropriate bodies to implement the autism strategy?

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2.

No –

Noting that the key aspects of the Autism Strategy include:

Access to healthcare services; access to education; access to employment; access to housing; access to Welsh language services; access to other public services; social inclusion; and access to advocacy services.

Health and local government clearly have key roles to play in implementing the Autism Strategy and, if agreed, an Autism Act, but this is a wide remit covering areas that the LA and NHS will not have jurisdiction to enforce.  Other partners, such as Careers Wales and the DWP oversee developments within employment and access to further education and the third sector may also have a role to play to ensure success.  

If only health and local authority are relevant bodies it is unclear how they would successfully exercise a duty in a non-devolved area such as employment.  It is similarly unclear how Welsh ministers would exercise control over the DWP for example with respect to employment.

The act as introduced does not change this section and the memorandum of understanding (Explanatory Memorandum) comments “it is outside the competence of the Assembly to make legislation imposing additional duties on them”.   The outcome is that other than provision of autism training the only aspects that this Act could influence would be those that are delivered by devolved functions.

Consultation response no:

Should the duty on relevant bodies to have regard to the autism strategy and guidance be reinforced by providing Welsh Ministers with a power of direction over relevant bodies?

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2.

It could be suggested that ‘relevant bodies’ needs to be more prescriptive to include other bodies who should be directed to understand and act to undertake their responsibilities. There is a risk that wider organisations will see that an Autism Act is for local authorities and NHS services to implement, as opposed to a broader context of change as noted within the current strategy.

With this in mind, it would need to be made clear to Welsh Ministers who are the relevant bodies that they give direction to, should there be a requirement to exercise power over a relevant body to act.

The act as introduced changes wording from “duty to have regard to” to “compliance with”.  It is unclear if this indicates a broad power of direction over local authorities and health boards, with respect to compliance with this Bill, if passed.  It also unclear whether this has potential to conflict with existing legislation that would lead to confusion.

Consultation response no:

Do you have any views about the timing set out in section 1(4) of the draft Bill for the publication of the Autism Strategy?

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2.

Yes – the timeframes set out are overly optimistic and carry risk. There will be a requirement for consultation. In addition, there needs to be recognition that local areas will have pre-identified commitments such as preparing for the implementation of the Additional Learning Needs and Education Tribunal (ALNET) Act, which are ongoing and require dedicated resources.

Rushing the development of the strategy, and subsequent publication could lead to revisions being required earlier than needed and additional work at a later stage.

A measured and realistic timeframe that takes into account the need to implement the ALNET Act, which also allows for engagement and inclusion of those who will be leading the implementation of an ASD strategy, would be more beneficial. This would support wider ownership of the strategy and any action plans that may develop as a result of this.

The act as introduced is unchanged in wording it is unclear from the memorandum of understanding how this could be achieved in such a short time scale particularly considering the level of consultation with stakeholders that would be required.

Consultation response no:

Do you have any views about the timing set out in section 3(2) for issuing guidance under the Bill?

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2.

As above. It would be helpful to reflect on lessons learned from the implementation of the Integrated Autism Service and other time sensitive developments to understand the implications of setting timeframes that are challenging to achieve. Whilst positive change has occurred, there was a significant amount of preparation and planning time, which would have benefitted the development of an integrated service. 

The act as introduced is unchanged the memorandum of understanding envisages that guidance would be developed in parallel with the strategy. Work could therefore begin on the guidance as soon as the Act is passed, which would allow up to nine months for the process.  This implies that the guidance can be written before the strategy has been written and consulted on which is poor practice.

Consultation response no:

Do you have any views about the timing set out in section 9 for when the Act comes into force?

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2.

The information provided implies that an Autism act would come into force prior to the publication of the ASD strategy or guidance. This would prove very challenging to implement as an Autism Act would have no purpose and will be challenging to govern without a code or standard as a basis to work undertaken.

This could lead to legal challenges and vague expectations from those who may benefit from an Act, but no guidance to work from for those who are supporting these individuals.

There would need to be an understanding that an Autism Act may come into force before duties of responsible bodies can be governed.

It is therefore difficult to see how these timelines could be adhered to while allowing an appropriate consultation to take place leading to the publication of a strategy and guidance that is a practical and achievable. 

As the timeline implies that the guidance cannot be finally written until the strategy that informs the guidance has been created, these seem overly optimistic and unrealistic time frames.

The act as introduced is unchanged, there are no notes in the memorandum and all concerns previously highlighted remain.

Consultation response no:

Do you agree that diagnosis should be completed within timescales in the relevant National Institute for Health and Care Excellence guidelines, as set out in in section 2(1)(c) of the draft Bill?

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2.

The NICE guidelines state that a diagnostic assessment for children should be started within the first 3 months.

https://www.nice.org.uk/guidance/cg128/chapter/Recommendations#local-pathway-for-recognition-referral-and-diagnostic-assessment-of-possible-autism

This does not refer to completion of assessment and confirmation if appropriate of diagnosis. There are no timeframes noted within NICE guidelines for adults for either assessment waiting times, or provision of a diagnosis if appropriate.

Within Neurodevelopment Services, the 26-week diagnostic waiting time for children is from referral to first appointment, and the assessment and diagnosis process can take longer and should be bespoke to the needs of the individual but not excessively lengthy.

It would be clearer to outline expectations for waiting times within an act or strategy, but with the acknowledgement of context and complexity of some cases that may require longer to assess to be able to confirm diagnosis.

Performance indicators to ensure compliance should include waiting times for governance purposes, but allow for flexibility that accounts for a thorough needs assessment. Simply adding a target will not resolve the issue of waiting times.

However, there is no maximum waiting time standard from referral to a final diagnosis of autism.

This has been the subject of recent debate in parliament. http://www.normanlamb.org.uk/maximum_waiting_times_for_autism_diagnosis_needed

It could be suggested that an Autism Act should refer to a minimum standard waiting time for adults and children, or timescales noted within NICE guidelines, whichever is shorter.

The act as introduced changes the wording from “completed” to “commenced”.  While this is positive and notes in the memorandum acknowledge that the potential complexity of the diagnostic process could make completion within three months challenging, it is doubtful if families and individuals would find this completely satisfactory.
Comme