Health and Social Care

When the political is also the personal

Many politicians enter the political fray because of a desire to serve their community. Often personal experience will drive one to want to change systems and processes which don’t work. Whether it is having experienced domestic abuse, or serving in Her Majesty’s Armed Forces or even seeing your parent’s business collapse because of external economics, most politicians have their own back story which drives them to keep delivering those leaflets and knocking on doors during the darkest, wettest and coldest days for a December election writes Carolyn Webster.

My story began in 2008. My son was two, and had just received a diagnosis of autism. It took a little while for me to come to terms with the implications and realisation that he would be dependent on me for the remainder of my life. But then, I started worrying about who would look after him after my days, or if I became incapable to care for his needs.

There’s a lot of thinking involved in this time, often overthinking and panic.

Each day found a new external challenge for me to overcome. Getting him into a school which would meet his needs. Accessing respite. Even having a trip out to a supermarket posed challenges which no-one would think about until you got there and found there were challenges.

Did you think about the noise made by lights in your local supermarket are enough to put a child with sensory difficulties into a panic? No, I didn’t before the first time I encountered it either. I will always be grateful to the Customer Services lady in Asda who did my shopping that day!

My story is no different to every other person whose life is touched by autism.

2008 was also significant as it was the year that the Labour Welsh Government developed the first-ever autism strategy among the UK nations, signalling that it was a clear political priority for Wales.

However, this momentum has fallen off a cliff and the strategy is no longer meeting the needs of autistic people and their families. It leaves little support for people to be supported in our communities to live their lives.

In 2009, it was a Conservative, Dame Cheryl Gillan MP, who led the Autism Act through the House of Commons, offering a statutory requirement on English local authorities and health boards, whilst ensuring Parliament review the act often to ensure that it is meeting the needs and changing as understanding and provision evolves.

The Act was not perfect. Let’s face it, which piece of legislation is? It is currently under review, as specified in that legislation, to improve it for future years.

Back in Wales, On November 30, 2016, the-then Minister for Social Services and Public Health, Rebecca Evans made a statement outlining a “… refreshed Autistic Spectrum Disorder Strategic Action Plan”, which “… responds to the priorities identified by people affected by autism”.

Ms Evans went on to outline how public services will work together to deliver “… quality, timely and consistent services”, and plans to continue to raise awareness of autism.

These measures”, she said, including the new waiting time target for assessment (setting a target for 26 weeks(!) from referral to first appointment), combined with changes already underway through the National Integrated Autism Service and Social Services and Well-being Act, “… will greatly improve the support available to people affected by autism in Wales”.

Ms Evans continued, saying: “However, we are not being complacent. The implementation advisory group I am setting up will rigorously monitor and report on progress. We will take swift action to address any gaps in provision.”

It is 2020. We are still seeing diagnosis take up to seven years. Yes, seven years.

We see children, my own son included, fall through gaps in the Social Services and Well Being Act. An Act which desperately needs overhauling. As one specialist lawyer observed to me, is the most terrible piece of legislation he had ever seen.

How can we see children – who are starting the process of transition into adult services – not being allocated a child’s disability social worker to liaise with the child, parents, their school and their future placement, based solely on their parents’ ability to provide care?

This isn’t about care for the parent carers: it’s about the needs of the young person.

If you think provision for children with autism is lacking, just wait till you poke your nose into adult autism provision.Many adults with autism are stuck with no support, poor access to help with accessing college courses, delayed funding decisions and often, no job. Only 10 percent of autistic adults in Wales are in full-time paid employment1. The figure in England is marginally better at 16 percent2  but one must wonder how this modest improvement can be achieved there. 
Autism is autism, regardless of which side of Offa’s Dyke you are on.

In March 2017, the-now leader of the Welsh Conservative group in the Welsh Parliament, won the Members’ ballot to introduce Autism Specific legislation through the National Assembly for Wales.

In January 2019, after engagement and consultation with autistic people, their families and carers, the Bill was debated in the Siambr.

With three committees in the National Assembly having also scrutinised the Bill, including the Health, Social Care and Sport Committee – which said that there is a pressing need to improve support and services for autistic people and their families and across the country – Labour’s Health Minister, Vaughan Gethin, declared during the debate that “… legislation was not needed because the Welsh Government is committed to improving autism services in other ways and intends to introduce a code of practice on autism services”.

The Labour-run Welsh Government published a final independent report on the Evaluation of the Integrated Autism Service (IAS) and the Autism Spectrum Disorder (ASD) Strategic Action Plan in April 2019.

National Autistic Society Cymru made clear its concerns:

Firstly, despite operating for a number of years in some areas, there is no clear reporting or monitoring mechanisms developed for the IAS. This makes it extremely difficult to judge demand for support, the capacity of the IAS’ to provide help or, crucially, whether or not the service is leading to improved outcomes for autistic people and their families. During the development of the Autism (Wales) Bill, the Welsh Government said that more time was needed to allow existing measures to bed in, but currently there isn’t any way to assess whether or not these initiatives are making a positive impact.

Secondly, it is clear that expectation management has been a significant issue. The timeline for the roll-out of the IAS has shifted considerably and each service has a different interpretation of the level of support they are expected to provide. This has meant that in some instances, those in need of help and support have had to wait far longer than they expected, only to be told that the IAS doesn’t provide the help they are seeking.”

The report has also highlighted further issues that need to be addressed.

These include:

Autistic people, their families and professionals don’t seem to have faith that there are sufficient services and support available to meet the wide range of needs that autistic people may have, such as access to education services or transition support;

A suggestion in the report that rather than a focus on developing the IAS alongside other commitments contained in the refreshed Action Plan, the focus on the IAS has been at the expense of other commitments, such as improving employment outcomes of autistic people; and

A lack of clarity on the future sustainability and funding of the IAS.

Eighteen months after Vaughan Gethin’s declaration I, and many other families, remain to be convinced about Labour’s commitment to people with autism in Wales.

The Welsh Conservative’s commitment to improving statutory services for the estimated 34,000 people in Wales who have autism is highlighted throughout the past two Assembly/Senedd terms.

In 2015, the Party’s Autism Spokesperson Mark Isherwood MS led an Individual Member’s Debate which called on the Labour Welsh Government to introduce an Autism Act for Wales.

Twenty-nine Members voted in favour, and there were 21 abstentions – each and every abstention was a Labour member.

Of course, a motion can be carried, but it doesn’t have to be enacted.

The following term saw  Welsh Conservative Paul Davies’ bill fall. Again, every single Labour Party Assembly Member present (and the Lib Dem Assembly member) voted against giving my son and the 33,999 other people living in Wales with autism the support that they need now, and the support he will need when I die.

So yes, this is personal.

I therefore call on every person whose life is touched by autism – individual with autism, parent, carer, sibling, neighbour, granny. You have evidence that the Conservatives in Wales are committed to the support so desperately needed. You have evidence that the Labour Group voted against your family’s support.

You might want to remember this in May 2021 when you cast your vote in the Senedd elections.

Carolyn Webster is a Councillor for Newcastle on Bridgend Borough County Council.

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