Tag Archives: Autism Act

Furness National Autistic Society Push for Action

furness pushThe National Autistic Society has been running an unusual campaign, Push for Action, that is probably one of it’s most successful in terms of participation and outcomes. That is not what makes it unusual. The NAS has a track record of successfully running campaigns that impact upon public policy regarding autism. Its most high-profile success to date was the campaign to get the Autism Act onto the statute books. This Act specifically tasks relevant government departments, along with local health and social services with identifying the needs of autistic adults and taking steps to meet those needs. Unfortunately, implementation of the Act has taken place in the context of the severest cut back in public spending ever that flowed from the financial meltdown of 2008 and the subsequent years of economic recession.

Which brings us back to Push for Action. The most important component of the Autism Act was an obligation on government to develop a coherent strategy for supporting adults with autism. That strategy is up for review next year. It is not perfect but the fear is that the government will use the economic crisis as an excuse to lower expectations and further weaken the provisions of the strategy. Push for Action is a response to that. What makes it unusual is that, instead of targeting senior politicians and civil servants in central government the campaign has been deliberately local. The success of the Adult Strategy depends on what happens in local health authorities, local government commissioning agencies, local education and housing departments. So people have organized locally

1. to identify good practice and celebrate it

2. to put pressure on local bodies that are not yet meeting their legal commitments

3. to raise awareness and understanding of the problems that local adults with autism have to deal with.

One brilliant idea has been the travelling Push for Action Button. Nicknamed Jenson, after the eponymous formula one racing driver, it has toured the country, providing a focus for local campaigners and helping to bring campaigners together from around the country. I saw this at first hand when Jenson came to Barrow-in-Furness. Furness NAS had already been busy signing up supporters and also has links with the local police going back to the launch of an autism alert card by Cumbria Constabulary in conjunction with the NAS. So when they knew that Jenson was coming they arranged for the news to be projected on the side of Furness House in the town’s main square from an upstairs window in the local police station. projection

I heard about it in a tweet on Tuesday night while sharing a pint with Tom Madders, who leads the campaign team at the NAS and was in Barrow for a Push for Action event the following day. We headed over to the town centre and met up with Piers Wright, who had carried the Button over from Sunderland that evening.

Piers and @TomMaddersNAS #pushforaction in downtown Barrow-in-Furness.We made the most of this photo opportunity and then had another beer to discuss the campaign. I was impressed by the enthusiasm of Tom and Piers, following a punishing schedule around the country (Sunderland, Barrow, Carlisle, Liverpool, Birkenhead in three days was just this segment of the tour) They were impressed by the enthusiasm of the NAS jenson1members and branches around the country and the warm reception from other autism organizations like Sunderland’s Autism Research Unit and Autism in Mind who had turned out to welcome Jenson and add their weight to the campaign. And this local campaigning is having an effect. Areas where implementation of the strategy had been minimal or tokenistic are taking real steps forward now. One problem with the Strategy is that a lot of the backroom work has been done in many areas but up front, positive action and new services are yet to emerge. This is beginning to change as the campaign brings people together and pressure to bear on local authorities.furness forum

Forum 28 hosted Barrow’s Push for Action event. The Mayor turned up with local media in tow and over a hundred new people signed up for the campaign. I could not attend as I was teaching that day. But I was heartened when one of our parents arrived in school sporting her Push for Action T shirt. Jenson was supposed to visit the school as well. But he got a better offer from Border Television News. Another time perhaps.

gerryLast I heard he was being met by Gerry Marsden of “Gerry and the Pacemakers“ fame after taking a “Ferry cross the Mersey” from Liverpool to events organized by Wirral Autistic Society.

Push for Action is a local campaign for local people that is having a national impact. Instead of the normal route of an advocacy organization like the NAS mobilizing its support to lobby government ministers and MPs, Push for Action has created genuine grassroots support for the campaign amongst people whose lives are not directly affected by autism. This popular support has a way of feeding into the political process that can be more effective than professional lobbying campaigns. As a result half of all MPs are aware of the campaign and over a third have come out in support. The government has agreed to a proper public consultation when it reviews the strategy next year. Local authorities are to be given stricter criteria for assessing compliance with the strategy. The government has agreed to collect local data on adults with autism for the first time and support the right to advocacy for vulnerable adults. Perhaps best of all, given that doctors in general practice are the gatekeepers and under new health service reforms, the commissioners for many services, The Royal College of General Practitioners has agreed to make autism a learning priority for GPs for the next three years.

So congratulations to Tom, Piers and Jenson. But most of all, thank you to all those people who give their time to build NAS branches and all the other organizations and individuals who have come together around the campaign to guarantee a better future for autistic adults.

What should our funding priorities be for autism?

The following poll has been posted on the UK Autism Linked In Group

At a time of limited public funding, what in your opinion is the most important area to tackle (I realise that it is important to do all these things, and I’m not advocating to drop any of them.

 

  • To research the causes of Autism.
  • To improve the diagnosis of Autism.
  • To offer support to people with ASD.
  • To offer support to parents.
  • To improve facilities in schools.

Despite the poll attracting very little attention I mention it because two of the comments express views that are widely held but rarely subject to scrutiny.

The first is that

Early intervention makes such a long term difference if provided in a timely and structured way.

It does not really matter which interventions we are talking about, although advocates for early intensive behavioural interventions consistently make this claim. They may be right but where is the evidence? Most studies concentrate on benefits to children compared to control groups that do not receive early intervention or else they compare benefits from differing versions of early intervention. There is very little research into adult outcomes and how they correlate to early intervention.

When Professor Patricia Howlin delivered the 2012 Centre for Research in Autism and Education (CRAE) Annual Lecture she cited figures from Shattuck et al (2012) that out of 11000 items of autism research published between 2000 and 2010 only twenty three pertained to adult interventions and services. The National Autistic Society campaign I Exist was precisely about the difficulties that adults encounter in accessing services they need in order to enjoy a full life. Our current campaign around implementation of the Autism Act is meant to ensure that local authorities meet their obligations under the Act to provide services for adults and do not use the current economic crisis as an excuse to do nothing or even cut back on existing services.

The second comment that

parents […] are most likely to be the key carer in any child’s life

is true for children. But children become adults and usually outlive their parents. Furthermore, those adults who are judged to lack capability to care for themselves are the responsibility of social services departments. Parents may still be heavily involved but they have no rights regarding the decisions taken on behalf of their adult offspring.

It is fair to debate whether parents or government agencies are best placed to identify the needs of adults, whatever the reason for their mental incapacity. But we will all be orphans one day. And so will our children. Sooner or later they are going to have to manage without us. Surely it is better to encourage that in our lifetime while we are still there to ease the transition.

Children have the right to an independent life. We have the right to enjoy the empty nest once our children have grown up. If that is not happening because of deficiencies in the system, those deficiencies will still be there when we are dead and gone.

So I voted to prioritize resources for adults. Not only do we owe it to the generations who have been under diagnosed and ill served up until now, such interventions have been shown to be cost effective. The National Audit office Report, Supporting People With Autism Through Adulthood found that identifying autistic adults and targeting services to meet their needs would actually result in a net saving by reducing the inefficient use of existing resources.

I am not advocating a pity party in which differing parts of the autism community vie for sympathy and support in order to maximize their share of the cake. We need a bigger cake and we need to challenge the assumptions of those who run the bakery. I question the predominant idea in autism that if we can fix the children it will be alright. The practical obstacles to finding a “fix” are enormous. And the ethical dimension has scarcely been considered, something I will begin to address in my next post. Meanwhile there is a lot we can do to fix society’s attitudes to autism and the social policy agenda that is causing needless harm and distress to vulnerable adults. Our children are tomorrow’s adults. So let us Act Now and Act Together for all their futures.