Cynulliad Cenedlaethol Cymru	National Assembly for Wales
Bil Awtistiaeth (Cymru) drafft	Draft Autism (Wales) Bill
Llythyr Ymgynghori DAB33	Consultation Letter DAB33
Ymateb gan Adran Gofal Cymdeithasol Conwy	Evidence from Conwy Social Care Department

Please refer to questions in the Consultation Letter.

Question	Answer
01	Calling it a disorder has a negative impact. Autism Spectrum would be a better term. We should not look at the disability but search for the positives – being supportive to people who receive this diagnosis, Language in schools is important – not being positive – attitudes need to change. We need to work within a social model way, not a medical way, in line with the Social Services and Wellbeing Act (Wales) 2014.
02	The WHO Diagnosis is under review currently – we could answer this question more comprehensively, if we could examine that. We acknowledge the importance of other neurodevelopmental disorders, but the importance of working with Autism – should not be diluted. We need both.
03	Important to include: Education – their involvement and commitment is as important as social care departments. In schools – within Conwy LA there are ASD Co-Ordinators within school settings but we understand that not all LEA’s will have ASD Co-ordinators. Third sector Agencies – i.e. the National Autistic Society, Advocacy. SSWBA suggests that more engagement with the Third Sector is the Way forward.
04	In order to provide consistent information on progress against the Strategy – the statutory bodies, commissioned services from the Local Authority - there should be accountability on a local level. The Welsh Government Ministers already have power of direction in relation to the Social Services and Wellbeing Act (Wales) 2014 which should cover this requirement. Education Authorities should provide feedback – we recommend that all Agencies come together to support the Strategy. Consideration needs to be given to how the Strategy can complement / link to the Additional Learning Needs Act
05	There may be issues on implementation on a local level – we are already committed to developing services in line with the introduction of the SS&WB Act (Wales) 2014. Strategy should influence what we are doing already. The strategy should also be linked to the Social Services and Wellbeing Act (Wales) 2014, following same principles. It’s a peoples Act. Will this cause strain/pressure on current service delivery? The Social Services and Wellbeing Act (Wales) 2014, will have priority in relation to how the Local Authority responds in meeting the needs of individuals and the community.
06	Guidance should be prepared for publication simultaneously with the Strategy. Can the introduction of the Strategy be delayed until the Guidance is ready?
07	Including a Timeline would be helpful. All should be in place at the same time. Training /Awareness sessions should be considered.
08	Currently on a local level, the criteria for acceptance for Disability Services, particularly health services, is for individuals whose IQ falls below 70, but we know that some people can have Autism but still function at a much higher level. The Team cannot work with people with a higher IQ level, therefore this would need reviewing. Local Authorities would need to consider how to respond to the request for assessment under the Social Services and Wellbeing Act (Wales) 2014, in order to avoid passing individuals from one Service area to another. We also need to be clear that without additional funding, this Bill could result in a dilution of services for people in general. Extra resources would be needed in order to give more focus and deliver services to more individuals. Other Services need to be aware of the Strategy, Vulnerable Peoples Service, Older Peoples Services, - there should be an awareness campaign to target this. ASD crosses all current Service organisational boundaries. It needs to be everyone’s business, including corporate, similarly to people who are Deaf, people with Autism do not necessarily need ‘social care’ they need an appropriate response from a Community aware of Autism and how it impacts on people. Timescale from referral to diagnosis is a major issue and causes the most stress and anxiety to the individual and to carers, parents – this needs to be reviewed. We also need to urge caution in terms of the age when a child is assessed, there needs to be a wider range of professionals who are involved with the child informing the assessment which would indicate that the child should be older. Services should, in the meantime work with the child and their family to provide support. Diagnosis should not be considered a passport to services.
09	We do not agree. There are no timescales set under the Social Services and Wellbeing Act (Wales) 2014, for; completion of assessment. The time it takes to carry out an assessment for people, varies according to the complexity of an individual’s circumstances and needs. To place timescales on this also risks creating a situation where individuals with ASD are prioritised above others. Schools/Education Authorities need to be more aware and develop better understanding of Autism at classroom level.
10	Yes, we agree.
11	Learning Disability Nurses – but only where an individual has Autism and an LD and only where an individual requires the input of LD Nursing. Educational Psychologists Paediatricians Other Professionals working with the individual, i.e. teachers, Flying Start Team, Team Around the Family (TAF) – all these professionals have good insight into the issues faced by the family and the individual child or adult. We work with parents, who may have Autism, and ongoing support for their families, needs to be considered.
12	The Social Services and Wellbeing Act (Wales) 2014, sets out what each Local Authority is required to do in order to meet the needs of individuals, including the early intervention and prevention services. Having an Act that says you must have a strategy which covers particular areas might work, but the Act cannot state that the strategy should set out how the needs of a person with autisms should be met by relevant bodies. For example; Housing, Health needs etc. All these bodies are governed by legislation. In addition that seems to move away from an approach supported by the Act that is based on an individual’s strengths and capabilities to a one size fits all approach? It maybe is more about good practice in those Agencies, having an awareness of the impact of Autism and how they might need to adjust – but then we have the Equalities Act to refer to in case if need also. The diagnosis process is too difficult and too long. IQ benchmarking is sometimes preventing much needed services from being delivered – if the principles of the Social Services and Wellbeing Act (Wales) 2014 are adhered to,  then the fact of a diagnosis becomes irrelevant, its about focus on individual outcomes. There needs to be more understanding of how people can access services, i.e. if professionals possess lack of understanding, this in turn, may prevent access. We have DEWIS which should be one stop for all services, but there needs to be a lot more work done to raise awareness and increase the effectiveness and impact of this resource. Adult and Childrens Services – should both have good awareness of what each Service can provide. Communication with families; there is a lack of understanding of the information that is accessible, ‘gaps’ in knowledge for some professionals. More joint working now can assist with this, but it still needs to progress. Some services may be ‘time specific’ but that is very difficult for people with Autism and in particular, support for parents with Autism needs to be ongoing for instance, parent support workers. Can the Strategy address this? Individual circumstances may prevent travelling to where services are located/more outreach services are needed. Increased opportunities for social engagement in order to promote better understanding of Autism.
13	Yes, but meaningful for people who have Autism, not just for the Welsh Government. We have moved away from Registers of people with Disabilities and would not want to start a register of people with ASD.
14	Both Quantitative and Qualitative data /information is needed. We should emphasize the importance of the delivery of the social model rather than importance placed on recording of clinical information. We need to capture the viewpoints of the people receiving services.
15	We need to be careful about the reason why any type of data is gathered, what will it be used for, what impact will gathering the data have? We think, in the Guidance, not necessarily on the face of the Bill. Need to include the views of people with Autism.
16	Yes, it is probably important to include some good/not so good case studies. The Third sector involvement in providing this information is probably more relevant that information provided by statutory services.
17	The Workforce strategy should include the range of training required on a rolling basis. On a continuous basis, in order to continue to promote understanding and awareness of the differences. It should be included within the National Curriculum. Teaching Assistants in Schools often have good knowledge and understanding of working with children and young adults with Autism as they work on a 1-1 basis can they be included within Campaigns? Research should be ongoing. A lot more publicity is needed. Plus, practical training on this subject, including training for teachers. Develop ‘support buddies’ in classes, children who champion and support the child with autism. Also, understanding that individuals with Autism, when filling in forms – do not always want to ‘tick the box for disability’ – they want to be recognised as individuals in their own right – this should be included within the campaign.
18	Consideration to be given to the work of the ‘Appropriate Adult’ within police custody situations. More awareness for Solicitors and the Police force is needed.
19	We recognise the need for a Strategy and if there is a requirement for an Act to set out what the Strategy should cover; how it is created, reviewed and impact evaluated then that is,  in our view, appropriate. We recognise the need to ensure that people have access to appropriate diagnosis via health which is now in place. We are uncertain if it is appropriate to create a separate piece of legislation that relates to a particular group of people in our communities. The same could be requested by people who are Deaf, who are Learning Disabled, people who have Physical Disabilities i.e. various neurodevelopmental conditions. The purpose of the Social Services and Wellbeing Act (Wales) 2014 and the Care Act in England was intended to replace a raft of legislation that had created a very complex and difficult situation in terms of the law for all involved. The Social Services and Wellbeing Act (Wales) 2014, is a people’s Act and it covers all ages. It is relevant for any person who meets the eligibility criteria, it also sets out how Local Authorities should meet the wellbeing needs of the local population, this includes people with Autism. Perhaps it is the Social Services and Wellbeing Act that needs to be amended to ensure that it reflects the needs of people with Autism and whole range of other conditions. Or, if there is a need for an ASD Act it should refer to relevant legislation and any good practice in terms of accessing rights under the Social Services and Wellbeing Act (Wales) 2014, for people with ASD and their carers rather than creating a potential two tier system of assessment. The basic principle is that we have legislation relevant to all of the areas mentioned in the Bill and the Strategy should link to the duties within various legislation ensuring that the necessary actions are in place to ensure that people with ASD are included. Training on understanding stress and anxiety for people with Autism – delivered by the National Autistic Society is particularly good (comments from social care practitioners). More support for people/parents to ‘navigate’ the social care and health systems is needed, particularly at the pre-diagnosis stage. Funding to be in place to support delivery of the Strategy, including schools within the delivery. There is a huge need for ongoing support/ more services for parents coping with autistic children. Resources cannot be time limited, the Strategy needs to address this, this is a life long condition. The language of the Bill and the Strategy – to be translated into Autism friendly guides. The Campaign for raising awareness is important. More sensitivity and understanding is needed;  that people will not automatically ‘tick the box’ for disability when completing forms – links to the Campaign.