Falling behind on autism policy

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by Jolene Cargill

Calum is a boisterous seven year old who loves computer games.  His older brother Lucas is obsessed with superheroes.

Mum Sandra Webster says they are like other young boys apart from one major difference; they have autism.  Sandra says it’s hard to understand the struggles they face every day, “The fact that they can speak masks their real difficulties.”

Ten year old Lucas also has a rare genetic condition known as Townes-Brocks syndrome, which affects one in quarter of a million.  He was born without an opening at his anus, renal failure and his bones are fused together.

“Calum was diagnosed with autism at three and goes to a special unit for communications difficulties.  But with Lucas, it’s been a nightmare.  A lot of his difficulties were put down to the Townes.”

Lucas has a part-time place at a special unit and goes to a mainstream primary two days a week where his physical needs are met, but Sandra says his communication disorder is not dealt with.  “They have hinted that his behaviour problems are down to bad parenting and that I am too soft on him.  He doesn’t fit into all the boxes.  They referred him to Mental Health Services but they can’t help him.”

The family, from Paisley, had no post diagnosis support apart from a small group she set up with other parents.  “There is a major lack of support in the area.  We got a letter after the diagnosis saying we have seen the family and have no plans to see them again.  There was a support group that had a waiting list to get onto the waiting list and now they have stopped taking any new referrals.  So the boys have no friends locally, they are totally isolated.”

Like Calum and Lucas, many people with autism say that the world, to them, is a mass of people, places and events that they struggle to make sense of, and which can make everyday interactions a frightening experience.

When Hugh O’Donnell MSP put forward the Autism (Scotland) Bill, parents and carers across Scotland saw light at the end of a very long tunnel.  With just five supporting votes, the Bill fell on 12 January 2011.

Scotland falls behind rest of UK

Sandra posted a message on a Facebook page by parents who set it up to discuss the Autism Bill and strategy and were inundated with responses.  She is just one of many parents angry at the scrapping of the Bill.  Sandra said, “Why shouldn’t we get a Bill?  People who have autism deserve to have their specific needs met.”

Autism is referred to as a spectrum condition, known as Autism Spectrum Disorder (ASD) to reflect the range and severity of difficulties.  All people with Autism have difficulties with social communication, interaction and imagination.  It is a unique condition that doesn’t fit neatly into the categories of learning difficulties or mental health; consequently both children and adults often fall through the cracks.

There are no clear records but it’s estimated that one in every hundred children in Scotland are born with ASD.  Scotland is the only part of the UK without statutory backing for an autism strategy.  The Bill put forward by Hugh O’Donnell MSP would have improved the provision of services to people with autism by placing a duty on ministers to issue guidance on how to implement an autism strategy to local authorities and health boards within a year.

Now the Government says it is committed to develop the current draft autism strategy, Towards an Autism Strategy for Scotland, which the Bill was predicated on.  But campaign groups and parents have criticized the strategy as a failure of social inclusion policy on the grounds that nothing will move forward unless rights for people with autism are put on a statutory footing.

Political manoeuvering

There was a split in support for the Bill among the two leading Autism charities consulted, The Scottish Society for Autism (SSA) and the National Autistic Society (NAS).  A campaign group has claimed the real reason the Bill fell was political.

Autism Rights has accused the SSA of throwing their toys out of the pram over who is the ‘top dog’ for autism services in Scotland.  In their consultation response the SSA points out that the National Autistic Society had ‘not recognised them as the leaders on autism policy in Scotland’.

Campaigners are angry about the alleged ‘turf war’ between the two main charities because they see it as a lost opportunity to turn the situation around by setting enforceable standards.

Fiona Sinclair, Secretary for Autism Rights said in an open letter to the Scottish Government, “In a time of severe cuts to public services, it is neither tolerable nor tenable to continue spending large amounts of money without adequate service standards by which to judge the quality of those services nor the statistics to gauge the level of need.”

“Instead of mounting a united campaign to create and support a coherent and workable Autism Strategy with the statutory backing of an Autism Bill, these charities have indulged in a turf war about who should be Top Autism Dog in Scotland.  The Draft Autism Strategy is merely a list of things the government will consider, and what we need is action.”

Fiona educates her 14 year old son Gregor at home after removing him from school due to the lack of care.  “They treated him appallingly.  I can’t put him back in that situation.  Now he has no Coordinated Support Plan (CSP) because he is out of school and the only placement we have been offered is in a special school in England.  The lack of service is appalling.”

The group also highlighted what they say is a conflict of interest in that the main charities consulted are also the main providers of services.  “The Government needs to talk to parents who don’t represent organizations like SSA that are contracted to provide services.  There is a clear conflict of interest there, since most of the income of these charities comes directly from the provision of services.  They are hardly going to be honest about the failures of those services because they have to protect their income.”

Figures from the last Annual Report for the SSA shows that just ten per cent of their £20 million income came from donations; most of it comes from contracts with local authorities.

Autism Rights also accused the Government of unacceptable delays in obtaining information that would help Local Authorities and health boards plan services, “A decade ago, the Scottish Executive accepted that they needed to collate statistics on the numbers of people with autism in Scotland, on which to base a budget for the provision of autism services.  Ten years on, the Scottish Government has not identified how to provide statistics.”

Robert Moffat, National Director of NAS Scotland said, “The debate in parliament showed there is cross-party recognition of the significant barriers faced by people with autism, and we welcome the Minister’s commitment to ensure that standards and scrutiny are at the heart of the Government’s autism strategy.”

“Above all we would urge the government to actively engage with people with direct experience of autism, to best understand their support needs and ensure the most effective possible outcome.”  NAS said in their consultation response that the draft strategy does not address the lack of data on people with autism, leaving thousands unsupported.

The most recent report by the President of the Additional Support Needs Tribunal Scotland supports that position.  It shows that almost half of all appeals to the Tribunal concerned children or young people with autism.  Yet this group only makes up 12% of the pupils identified as having additional support needs.  And without a diagnosis, access to support is impossible.

The SSA said it didn’t support the Bill on the grounds it would be better to get the strategy right first and legislation later to deliver ‘real and significant’ benefits for people.  A spokesman for SSA denied the accusations, saying they are now working with NAS to find a way forward.  “Our only difference was on tactics of how to achieve real, revolutionary change.”

Cost of delays

Some Ministers who rejected the Bill feared it would open the floodgates; people would want one for every condition. Mig Coupe, Head of Direct Help and Support at Mindroom, a Scottish charity dedicated to helping children and adults with learning difficulties, said “People with autism have a right to have their specific needs met, but if they passed the Bill they would have had to look at a strategy for all learning difficulties.”

So fourteen years on since the Jordan report on autism education to the Scottish office and nine years since the Needs Assessment we have a draft strategy – with no clear targets and timeline for actions.

One reason for the lack of a coherent strategy cited by the lead committee on the Autism Bill was that they had ‘no way to measure progress’ of initiatives for people with Autistic Spectrum Disorders (ASD).

To date, The Scottish Government has given £4 million to its ASD Reference Group that is responsible for driving autism policy in Scotland.  The National Audit Office has identified the costs of autism services and support at approximately £2.3 billion for Scotland each year.  Given the increased pressure on public finances, it seems short sighted not to bring in a Bill that could ensure limited resources are used to greatest effect.

One parent said, “It just seems to us that we have spent more and more money employing more and more people to stop our children getting the things they need.”

Post code lottery

The Scottish Government admits in the draft strategy that more needs to be done to address the current ‘post code lottery’ of services.  As it stands the only guidance on commissioning services for people with autism is voluntary guidance available to download from the Scottish Government website.  And existing accreditation schemes such as the GTC ‘Professional Recognition’ in ASD are based on self-assessment.

Schools have a legal duty to make reasonable adjustments for pupils who need extra support with learning.  However, without enforceable standards, the risk is that families already disenfranchised by their local services will continue to struggle without support.

HMIE has called for a more ‘strategic’ approach to planning for the needs of pupils with autism.  The Government funded Scottish Autism Service Network worked with the National Centre for Autism Studies University of Strathclyde and produced an ‘Autism Toolbox’ in 2009 which is available to schools online, but there has been no follow-up assessment to measure its impact.

Significant gaps

Colin Smith, Autism Manager at Hope for Autism said there are significant gaps in the autism strategy and that the needs of people with autism have to be considered across all community services.

“There is no real authority behind a strategy to tackle inconsistencies from area to area.  If we had legislation we would get groups coming forward asking for one for other conditions.  But that’s a failure of the social inclusion ideology; one size doesn’t fit all.”

Hope for Autism is the only post diagnosis support service for parents in North Lanarkshire.  Many areas don’t provide a basic level of service and there are gaps in diagnostic services, child and adolescent mental health services, school support, adult services and support into employment.

Service cuts

The pressure on existing levels of services looks set to get worse. NAS recently sent a notice to their regional coordinators in Scotland advising them that a proposal to remodel of the free ‘Help’ course for parents would involve reducing the number of staff in the UK from twenty one to two.  These seminars provide practical support and advice to parents, carers and individuals with autism.  NAS said they couldn’t yet comment on possible redundancies but if the proposed restructure goes ahead there will be no staff based in Scotland after the end or March 2011.

One mum we spoke to in North Lanarkshire told us her local health board had openly told her there are no resources to help her daughter; this is a serious claim as it contravenes disability equality legislation.

Mary Walker had to fight to get a diagnosis of ASD for Gemma last February and since then there has been no support offered.  “We got a report from the lab four months after the tests were done which confirmed the ASD diagnosis and a booklet and that was it.”

After a year of begging for occupational therapy to help her four year old daughter with her sensory and movement problems, she was told that she wasn’t entitled to support because she had autism.  “They told me there wasn’t enough money to treat children with autism.  It makes me so angry that she has been abandoned.  It’s as if she is no more to them than a label.”

A spokeswoman for NHS North Lanarkshire said, “We take any claims of discrimination very seriously and if would urge this is reported so it can be investigated.”