Thursday, 22 January 2015

Assembly debates future of autism services

AMs recently debated the need for an Autism Act following the current
failure of a trail-blazing autism strategy to deliver on the ground.
(Pic : National Autistic Society Cymru)
Yesterday, the National Assembly debated a cross-party individual member's motion on autism services. The motion welcomed achievements resulting from the existing plan on autism, but demanded greater clarity on the care and support families dealing with autism require, enshrined in Welsh law via an Autism Act.

This is an issue close to the hearts of a large number of AMs, and the National Autistic Society Cymru (NAS) are obviously one of the more effective lobbying organisations in the Senedd.

As a result, there were an unusually large number of speakers, and many of them repeated the same points. So for the sake of brevity I'll sum up those points first.
  • Wales was one of the first nations to introduce a specific autism strategy (in 2008 pdf), and this was a source of pride for AMs, but they're disappointed in how it has been delivered.
  • There's no ring-fencing of autism funds by local authorities, with some agreeing to do so voluntarily and others not. Current funding arrangements (on a year-by-year basis) mean councils have no opportunity to develop long-term plans.
  • There are very serious problems getting an autism diagnosis – especially children – in the Hywel Dda Local Health Board (Pembs., Carms., Ceredigion) with waits as long as seven years for a diagnosis. This means some children enter secondary school without a diagnosis, which affects access to specialist services.
  • A survey by the NAS showed massive dissatisfaction amongst parents/carers, as well as adults and children with autism. 53% of parents called the diagnostic process "painful", while 96% of autistic adults said there was a lack of professional understanding. Only 16% of patients were satisfied with their transition to social care.
  • There was cross-party support for an Autism Act in the Fifth Assembly (after May 2016), which would enshrine the rights of children and adults with autism, as well as their parents/carers, in law.

The debate started with Mark Isherwood AM (Con, North Wales) - who chairs the Assembly's Cross-Party Group on Autism. He said (clip) there were up to 30,000 children and adults in Wales with autistic spectrum disorders (ASDs). Despite the strategy, he said more needs to be done, with greater statutory duties placed on local authorities. He called upon all parties to commit to introducing an Autism Act in their 2016 manifestos.

Mark said that although the NAS said the strategy was a "world first", people with autism usually only access treatments and therapies if it's presented alongside another medical condition or learning disability, even though autism is a condition in its own right. With problems facing those with autism including "painful" diagnosis processes, postcode lotteries, a lack of understanding by managers and, in schools, illegal short-term exclusions (Whipperines & Class Clowns), any future Act needs to include diagnostic and post-diagnostic support to ensure the "fundamentals are in place first".

Alun Davies AM (Lab, Blaenau Gwent) said the strategy was a "good strategy, with broad support" (clip). He said the fault isn't with the strategy but with delivery, which was, "at best patchy, at worse seriously deficient". He highlighted serious issues with autism services in his own area of Blaenau Gwent, and the Assembly specifically has a duty to ensure the strategy is delivered, as it's not just a matter for local government.

Paul Davies AM (Con, Preseli Pembs.) said he long supported a need for timely diagnosis (clip), and although there are examples of good practice in Pembrokeshire, waits were excessive (the seven year figure mentioned above) – with an average of two children diagnosed a month. Paul said early intervention was needed to ensure the long-term well being of autistic children as they go through school.

He accepts that diagnosing autism isn't easy as it's down to monitoring behaviour closely. That means teachers need proper training in recognising ASDs. Also, Careers Wales provide vital support to adults with autism looking for work, but they don't have the knowledge to work with these adults. Paul said, "being first (to introduce an autism strategy) isn't the same as being first rate".

Lindsay Whittle AM (Plaid, South Wales East) said he had three major concerns (clip); firstly, the lack of monitoring by the Welsh Government of autism services. Secondly, a concern raised by a a constituent about whether teachers are properly trained to deal with ASD pupils.

Thirdly, he raised a good point (often overlooked) about older people with ASD, as people "can't grow out of it" and it remains for the rest of their lives. Lindsay warned this will, "become a serious challenge for health and social care services", and more data was needed on over-65s with autism as part of any future Act.

William Powell AM (Lib Dem, Mid & West Wales), said the Cross-Party Group was "dynamic" and meetings were often very well attended (clip). He paid tribute to the NAS, saying that serious shortcomings in provision were "feeding clamour for an Autism Act", adding that in his capacity as Chair of the Petitions Committee they're dealing with a petition about autism diagnoses in Hywel Dda LHB. He said families were, "showing enormous resilience" and were entitled to have their needs enshrined in law.

Jeff Cuthbert AM (Lab, Caerphilly), said Wales needs to recognise and support parents and those who work with autistic children (clip). He plugged the Autism Heroes Awards which were established by a constituent. Jeff believes the Welsh Government should compliment their work by engaging with them, but this cannot replace the statutory duties placed on authorities. He wasn't opposed to an Autism Act in principle, but would need to be persuaded of the benefits, and would prefer the current strategy was properly delivered instead.

Angela Burns AM (Con, Carms. E & S. Pembs.) described the strategy as "useful" (clip), as it focused minds and concentrated resources. Unfortunately, in too many cases it hasn't helped at all, citing waiting lists in her own area 200+ cases long. Angela said there were too many interim diagnoses, and when schools suspect autism in pupils, there was often a slow response from local health boards.

Aled Roberts AM (Lib Dem, North Wales), gave an example of parents of autistic children in Wrexham who said the bureaucracy was in place, but they were seeing no improvements (clip), with some North Walian councils "skimming" autism funding to finance the bureaucracy and management of the schemes themselves. He described the NAS figures as "frightening", but there needs to be a look at whether an Autism Act in itself would improve the situation.

Keith Davies AM (Lab, Llanelli) said, "raising awareness isn't the greatest issue facing us", but the major issue was strategy at a local and national level (clip). He said in an ideal world they wouldn't proceed with legislation, but this is one area where collaboration between local authorities would benefit everyone.

In response, Health Minister Mark Drakeford (Lab, Cardiff West) said there was £12million in new funding allocated to support the aims of the autism strategy and improve lives (clip). While he admitted there was always more to be done, he was working with interested parties to refresh the ASD action plan, but said parties were waiting to see how the regulations resulting from the Social Services & Wellbeing Act 2014 and proposed special educational needs legislation would impact their work.

The refresh plan was due to be launched this month but has, as a result of the legislative/regulatory proposals, been delayed. The Minister said that as there are immediate concerns about autism services, he'll introduce an interim delivery plan by the end of March 2015.

Former Deputy Minister for Children & Social Services, Gwenda Thomas AM (Lab, Neath), intervened to say that a child must receive care and support whether there was a formal diagnosis or not, and this was clearly stated in the Social Services Act.

The Minister continued by saying diagnosis is never a fixed process with autism as it responds to individual development, though funding for ASD will be permanently within the block grants given to local authorities. He said there wasn't enough time to take a Bill through the Assembly before April 2016, but parties could include it in their manifestos for the election.

Rhodri Glyn Thomas AM (Plaid, Carms E. & Dinefwr) summed up what the others had said (clip), but raised his own point about provision being even worse for those seeking services in Welsh. Rhodri said every case was individual and it's hard to generalise ASD, howeverg people said "everything would be fine once Wales had a strategy", but now artificial barriers are being put in place and the challenge is to ensure children and adults alike have access to the services they need.

The motion was agreed by 29 votes to 21.

"First The Worst...."
Stormont and Westminster passed Autism Acts in 2011 and 2009 respectively - mainly
to do in Northern Ireland and England what Wales has already done without a law.
(Pic : Autism Northern Ireland)
OK, Wales has a feather in its cap because we were one of the first nations to publish an autism strategy.

The Welsh Government/Labour have a fetish for doing things though strategies, guidance and regulations, so it's not exactly a shock that - yet again - one of their much-vaunted strategies is failing to deliver on the ground.

One reason why local councils and health boards are under strain is because the detection and diagnoses of autism has radically changed over the last 10-15 years. What would've once been considered an "eccentric personality" is now diagnosed as Asperger's Syndrome. There's an outside chance – backed by 2013 guidelines from the American Psychiatric Association – that ASDs are over-diagnosed.

Despite all that, there's a clear desperate need for all those families and individuals who live with autism to have access to the services they require, and there was cross-party commitment to that in yesterday's debate.

Although it's still more than a year away, we're starting to get an idea of what legislation we might see in the Fifth Assembly – though it's unlikely I'll be around to cover it. It wouldn't surprise me if all four parties end up putting an Autism Act in their manifestos in some form, which will effectively guarantee its introduction.

Are the needs of people with certain diseases best served through legislation though?

I can see the arguments for and against an Autism Act. There's a precedent in the Assembly for "disease laws" in the form of the Asbestos Disease Bill – though it has a very different aim – but at the same time a law could lead to the Welsh Government and local authorities being forced into making promises they can't keep, especially with a disorder that's often difficult and time-consuming to diagnose and manage like autism.


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