Part of the debate – in the Senedd at 3:06 pm on 19 June 2018.
Thank you for your statement. I have to say the vast amount of autism-related casework my office is handling and the personal stories from outside of north Wales we're receiving indicate that huge sums of money continue to be spent getting it, sadly, very, very and sometimes tragically wrong. How do you respond to concerns raised with me that one of the four integrated autism service, or IAS, areas where the service has been launched are now saying they just want to become a diagnostic service and lose their support worker function? Another area is already making representations that, despite already receiving an extra £150,000 to £170,000 annually from local authorities and health boards on top of their IAS funding, they can't cope with the level of referrals they're receiving, and these are medical, not social referrals, not focused on prevention and intervention. Concern has been expressed to me that the majority of people accessing current non-IAS services will disappear or present in crisis. There is a concern about the lack of numbers being picked up by the IAS and the lack of services from IAS to pick up the slack from third sector bodies that, progressively, are losing local support, despite being supported sometimes by hundreds of local members of the autism community.
You referred to the 26-week waiting time standard from referral to first-assessment appointment. What measures have the Welsh Government put in place to take action when health boards aren't meeting that target? Is the waiting-time data being updated quarterly, and if not, what action is the Welsh Government taking?
How many autistic people have benefited from employment as a result of the Getting Ahead 2 programme? Did the Welsh Government achieve accreditation in the 'positive about working with autism' charter last year, and how is it maintaining its accreditation this year and beyond?
How many people have accessed the integrated service in each of the four health boards where the service was launched, which professionals have received awareness training, and what are the priority areas, as we look forward, on that? Of course, in addition to awareness training, which is often led by non-autistic people who are professionals in the medical or caring professions, which have a medical focus, what action are you taking or will you take to address the massive deficit in autism acceptance and equality training led by trainers who are autistic people or members of the autism community, focused on autistic and non-autistic people working together to overcome the disabling barriers in society?
Has the advisory group agreed a work plan? Will the Welsh Government publish that work plan if it has? How is the Welsh Government responding to the recommendations contained in the interim independent evaluation of its autism strategy and integrated autism service, which found weaknesses and inconsistencies in both assessment and diagnostic services for adults with autism and in support services for adults and children with autism? It said
'Success requires a co-productive approach involving staff, service users and carers in the design, implementation and evaluation of the IAS.'
But there are concerns about the top-down approach, which they said had 'stifled this'.
With the service being launched in north Wales on 27 June, as you said, what action will you be taking when you learn of stories that I raised last week, such as those of the judicial review proceedings settled recently, prior to a full hearing, when Flintshire council agreed to provide a formal apology and make a damages award after failing to assess and meet the needs of an autistic young person with additional needs, and to take full account of her parent carers' needs? That's just one case. I have I don't know how many similar cases—primarily but not exclusively in Flintshire—at the moment. How would you respond to the Flintshire parent who e-mailed me yesterday regarding the response to her Flintshire CAMHS complaint, which said, 'Your daughter doesn't have an ongoing anxiety condition', and was simply an apology for poor communication, but they'd been forced to a private psychiatrist because of lack of care, who has diagnosed the daughter with severe PTSD, depression and anxiety? She says, 'We're now glad we're getting treatment and a recommendation for home tutoring, thanks to our private psychiatrist, but my daughter should have received this when she asked Flintshire CAMHS for help six months ago.'
I've nearly finished, but a key issue is the genderised issue. I've raised this many times, but I'm still almost daily receiving casework where girls clearly requiring autism diagnoses are being told they couldn't possibly have a diagnosis. A letter, for instance, from the health board here:
'It's difficult to marry the description of difficulties given by some families with the information from teaching staff who report no or minimal issues in the school environment. This is not indicative of children with ASD', when a wealth of national and international research and evidence directly contradicts that, in relation to the masking and coping strategies that many children, and particularly girls, adopt.
You say that calls for autism legislation—