- Parents having to give up work to care for their children or just to enable them to take part in activities and events at school as numbers of personal assistants in school are cut.
- Children not being supported in class and unable to take part and learn – leading to under achievement, behavioural issues, children being excluded from school and in turn moving into a life of unemployment and poverty.
- Parents having lifelong caring responsibilities when young people do not achieve independence and the worry about what happens when they are no longer there to look after their adult children.
ACT NOW in Scotland have been recording the personal testimonies of people with autism and their carers who are being affected by cuts in service provision and by the Work Capability Assessment. Part of the campaign focuses on challenging the lack of awareness that assessors from ATOS (contracted by DWP) have of autism. ACT NOW is campaigning for the rights of people with autism to have an advocate present from the first point of contact by the DWP. They are also campaigning for greater input by carers and guardians during the assessment.
More widely, the proposed changes to DLA and the introduction of Personal Independence Payment (PIP) are sources of great concern. Welfare reform will impact on these families in a hugely negative and life changing way.
Parent in Edinburgh
Living with a very aggressive son (6). Child and Adolescent Mental Health Services have said they "don't have the resources to support them fully right now". This family is at crisis point and without help from a local charity, they probably couldn't have stayed together.
Parent in South Lanarkshire
Son's (23) Disability Living Allowance Care Component has been reduced from high to low upon review because review deems he doesn't need help to communicate, eat/drink and is not at risk of neglecting himself (amongst other things). None of that is in fact true and no professional who has had contact with this young man has been asked to verify any of his difficulties. This is despite his diagnosis and years of necessary support for these very issues. The parent is appealing but is really struggling financially to support her son as this reduction has meant the removal of her Carer’s Allowance.
Parent in Glasgow
Son (12) hasn't been in school (a specialist unit for children with communication disorders) since early February because there aren’t enough members of staff to ensure his safety. The education department has confirmed that new staff have been found, but can’t confirm when the child will start back in education again because those employees need to be trained. She has had to take legal advice because of poor communication and this has affected her ability to work.
Parent in Aberdeen
A single mum with three kids (one of whom has Additional Support Needs and is in a special school). Her eldest boy who has Autistic Spectrum Disorder, has been out of primary school (P6) for months because the school "can't cope" with him because of his challenging behaviour. They have had the police round nearly every day as neighbours complain and she has been advised to lock herself and her two other children away if her son "loses" it. She is at her wits end and has even asked Social Work to take her son into care. They refused as she has the support of her mum.