– 72% of people responding to a survey about their experiences of the Scottish Government and COSLA’s 10 year Strategy for Autism reported that they did not have enough support to meet their needs –
The findings are published in today’s ‘The Accountability Gap’, a report from the Cross-Party Group (CPG) on Autism’s review of the Scottish Government and COSLA’s 10-year Strategy for Autism.
Supported by charities National Autistic Society Scotland and Scottish Autism, who provide Joint-Secretariat to the CPG, a survey carried out as part of the review also found that:
- 72% of respondents said they did not have enough support to meet their needs
- 78% of respondents said that it was not easy accessing support locally
- 50% felt that autism awareness among the general public had not improved
- 69% said that with more support they would feel less isolated
- 36% said they received no support within 12 months of receiving a diagnosis.
The CPG on Autism is Co-Convened by Annie Wells MSP and Alexander Burnett MSP, and has a large membership that comprises of MSPs, autistic people, families, organisations and professionals from across Scotland. The group meets regularly looking at issues faced by autistic people and families.
In 2011, the Scottish Government together with COSLA published a 10-year Scottish Strategy for Autism that set out priorities and aimed to deliver strategic action for autistic people and their families in Scotland.
The CPG on Autism undertook its review from May 2019 to January 2020 and heard first-hand the difficulties faced by autistic people and their families in Scotland. It found widespread recognition that the Government’s strategy set out a welcome vision and was well-intentioned however the majority of people who participated said there had been limited impact for many people in a number of areas including autism diagnosis and post-diagnostic support, as well as support in education, care and employment.
It also highlighted how a lack of accountability at local level, is leaving autistic people and families fighting, often with little success, to get the support they need.
The review makes 10 recommendations that aim to help improve the lives of autistic people that the Scottish Government and COSLA should consider when the Strategy comes to the end of its lifespan in 2021. These include:
- Solving the accountability gap by establishing a new Commissioner role, whose remit includes ensuing that autistic people and families get the support they need.
- Developing a new Scottish Strategy for Autism that is co-created between autistic people, families, charities, COSLA and the Government, is appropriately funded and delivers real sustainable change.
Co-Convener of the Cross-Party Group on Autism, Alexander Burnett MSP, said: “The majority view of the hundreds of people who have been involved in our review is that the ambition and aspiration set out in the Scottish Government’s strategy has not been realised in practice and that many autistic people and their families lack the appropriate levels of support in order to thrive in our society.
“We found that there are concerns surrounding a lack of training for professionals, as well as a lack of pre and post diagnosis support across a number of areas 2including social care, education, transition into adulthood, housing and employment.
“In the context of the pandemic we believe the report’s recommendations are more important than ever for Scottish Government, COSLA and partners to consider when planning for what comes next when the strategy is due to come to an end next year.
“Over the years, we have seen numerous reports and reviews on autism, however there seems to be little evidence to suggest any real change is being delivered at a local level.
“This is a system that is repeatedly failing to meet the rights and needs of autistic people. We must therefore focus on systemic sustainable change to enable better access to education, health, social and community services for autistic people and their families.”
Kirsteen, a mother from Aberdeen said: “I have an autistic son called Toby who is now a young adult. When Toby was younger he received support from the school, college and the local authority but virtually stopped overnight when he became 16.
“Toby needs a lot of support and without it we struggled to cope as a family. Ultimately, we reached crisis point and things escalated even to the extent the police got involved as he became very frustrated and lashed out.
“Toby is now living in his own flat which initially I had to pay for as the local authority did not provide anything that met his needs. They had offered a place in a hostel for people with drug issues which is completely inappropriate.
“I’m now selling my place so I can move closer to Toby as I desperately want to make sure he is supported. I do this because my son and daughters mean the world to me but it’s hugely stressful to hold down a full-time career in nursing and provide support for someone with such complex needs.
“I don’t feel things have got better over the last few years and I don’t think they will change unless Scotland implements legislation – committees and reviews on autism make no difference.”
Nick Ward, Director of National Autistic Society Scotland, said: “Today’s ‘Accountability Gap’ report from the Cross-Party Group paints a stark picture of the struggles that Scotland’s 56,000 autistic people and their families face in order to get the services they are entitled to – a struggle which sadly they often lose leaving them frustrated, distraught and often in crisis.
“The Government must now look to build on the 10-year strategy by building accountability into the system so people get the services and support they so desperately need.”
Charlene Tait, Deputy Chief Executive Officer at Scottish Autism, said: “We recognise the Scottish Government’s commitment through its 10-year strategy to set out a landscape where autistic people and their families have access to the services and support they need.
“However, there is an evident ‘accountability gap’ between service provision and what is available. The reality is that many autistic people and their families often have to fight to get the vital services and support to which they are entitled.
“Over the years, we have seen numerous reports and reviews on autism, however there seems to be little evidence to suggest any real change is being delivered at a local level. This is a system that is repeatedly failing to meet the rights and needs of autistic people.
“We must therefore focus on systemic sustainable change to enable better access to education, health, social and community services for autistic people and their families.”