Voices of autistic people and their families must be at heart of care consultation - Nick Ward

We are on the edge of significant and profound positive change for autistic people and their families here in Scotland.

Nick Ward, Director of National Autistic Society Scotland

In the lead up to the Scottish Parliamentary Election in May we at the National Autistic Society Scotland and our friends at Scottish Autism and ENABLE Scotland campaigned tirelessly for the world’s first Commissioner for autistic people and people with a learning disability.

We were thrilled to see the commitment in four of the five main party manifestos including a strong commitment from the SNP to legislate. We know that a Commissioner could make a huge difference: it would provide a champion for individuals and their families who we often hear are endlessly battling the system for much needed support, it could ensure that everyone had a route to a diagnosis, that human rights were being upheld, best practice being shared and that there was fair route for redress when things have gone wrong.

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This next 12 months are critical as the Government has said it will begin a scoping exercise on the legal powers and remit of the body. This legislation will be a huge opportunity for change and one we hope will see autistic people, families, carers and organisations far and wide engage with. We must not allow the Commissioner to be a toothless czar it must have the right powers together with resources to make a real difference.

In the meantime, huge system change is afoot with the introduction of a National Care Service. This will quite likely be the biggest change to the health and social care system in a generation with responsibility wrestled away from local authorities and centralised under a new national body accountable to Government Ministers.

As the column inches rack up on social care in light of these reforms and the controversies around the National Insurance rise, the focus is once again on older people. That’s important of course and perhaps understand as we all get old, but we must remember that many disabled people, including many autistic people, rely on social care support on a daily basis. That can be a few hours a week to round the clock care in specialist housing particularly for those with very significant needs.

Furthermore, we cannot allow the debate to become solely focused on structure and standards, important as they are we must also talk about ‘unmet need’ and how more people can be brought into the system. In a survey we carried out in 2019 we found that over 70 per cent of autistic people did not have enough support locally to meet their needs.

In truth much of the care and support for autistic adults is provided by families. They do it out of love and in some cases to the detriment of their health, relationships and careers.

We’ve sadly heard many instances where without care and support, people have struggled and through no fault of their own ended up being detained under mental health laws, entering the criminal justice system or rough sleeping.

We cannot allow this to happen. A successful civilised society is one which looks firstly to its most vulnerable and does not rely simply on the goodwill of families.

We need to make sure that the voices of autistic people, their families and carers are at the heart of the consultation on both the National Care Service and the Commissioner. These structures need to be designed in a way that are about empowering people to fulfil their potential as active citizens, with a quality of life that many of us take for granted.

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