(Title Image: NAS Cymru)
Although Wales led the way in developing the first strategic action plan for autism in 2008, it hasn’t been a resounding success since then.
There are long-standing complaints from the families of autistic children and autistic adults that when it comes to diagnosing autistic spectrum disorders (ASD) they face excessively long waiting times. There have also been serious concerns about low levels of employment amongst ASD adults and inconsistent levels of service across Wales.
The Welsh Government have long argued – and did so again a few weeks ago – that there’s no need to introduce a law on autism as there are improved plans in place and a separate law, the Additional Learning Needs Act 2018, includes provisions for ASD learners.
While many families and people dealing with ASD support the introduction of the Bill, there was opposition from professionals mainly due to the focus on one specific condition. Getting the Bill passed, despite support from all parts of the political spectrum, is going to be a challenge.
The Lowdown: 3 Key Proposals in the Bill
1. A new Autism Strategy
The Welsh Government will be legally obliged to publish an autism strategy within 6 months of the Act coming into force, with an independent review every 3 years afterwards.
The strategy must include provisions relating to ASD diagnosis, treatment and management pathways and various social, health and economic factors such as employment, advocacy, housing, Welsh language requirements and access to healthcare.
2. Minimum levels of service and reductions in waiting times
The strategy should ensure an assessment of support is carried out within 42 working days of an ASD diagnosis and ensure that people with ASD are not denied access to support based on their IQ.
Presumably, the latter is a reference to Asperger’s Syndrome, where those with the conidtion often have above-average intelligence and may not be deemed in need of support compared to those with learning disabilities.
The Bill also says there should be consistency in the level of service across Wales and a waiting time target from referral to diagnosis should be set at three months (it’s currently 26 weeks).
3. Better data collection & public awareness
The Welsh Government will be obliged to collect and publish anonymised data on ASD annually, with the NHS responsible for collecting specific categories of data. This is to help plan services.
The Bill also makes provisions for increased public and professional awareness of ASD after the strategy is published.
How much will the Autism Bill cost?
The direct and indirect costs of ASD to Wales is estimated at £5.6billion over five years, mainly through lost productivity (i.e. higher unemployment and economic activity rates amongst ASD adults). ASD people also receive £53-55million a year in welfare (though that’s non-devolved).
The total cost of the Bill itself is estimated at just over £7.3million, mainly made up of administrative costs relating to training, monitoring/data gathering and compliance – mainly falling on the NHS.
The wider benefit of the Bill is unquantified.