Carers Votes Count in this Election
Everywhere you look there are stories in the press about cuts to funding and services – but what does that mean to the people who use those services?
Cuts to local budgets are having a profound impact on the lives of unpaid carers, particularly parents of children with disabilities. This is largely hidden from the electorate. And many of the people affected are too tired – or too scared – to hold their heads up and fight for the support they need.
Support enables families to stay together. Support prevents crises from developing and the need for statutory services to get involved in depth. Bring into the mix the impact of welfare reform and the drive to reduce numbers claiming disability benefits – there is a tipping point for families and children affected and we are getting closer to it.
Carers’ charities and online campaigners are working together to ensure the voices of these unpaid carers and their families are being heard and responded to during the election campaign.
The Princess Royal Trust for Carers (The Trust) and ACT NOW (Autism Campaigners Together) want to raise the profile of families affected by autistic spectrum disorders. There are an estimated 50,000 people with autism in Scotland and their care is largely provided by unpaid carers, usually parents and siblings.
The Princess Royal Trust for Carers work with parent carers across Scotland through the network of local Carers’ Centres. ACT NOW are a core group of people passionate about the future and wellbeing of children and adults with an Autistic Spectrum Disorder in the UK.
With a live campaign on the internet and Facebook, ACT NOW are fighting the cuts to benefits, services and provision – particularly those being experienced by families affected by Autistic Spectrum Disorders.
Carers across Scotland save the Government millions – an estimated 1 in 8 people are caring for someone in Scotland. The Princess Royal Trust for Carers, ACT NOW and other campaigning groups want to highlight the horrific circumstances faced by parent carers across Scotland.
Not recognising and supporting these families could lead to:
- 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 and The Princess Royal Trust for Carers are calling for the voice of these carers to be heard during the Scottish Election Campaign. They are calling for existing MSPs and new candidates to lay out what they will do to ensure parents, like those outlined in the case studies below, are recognised and supported better and that children with autism have the same opportunities and life chances as their peers.
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.
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.
ACT NOW are regularly hearing from parent carers who lie awake at night terrified because they don't know what will happen to their adult children, especially if their benefits and support provision is taken away, largely due to ignorance about autism. The health of carers when living with these pressures and strains daily is precarious, especially if they feel they and their children are being discriminated against and don't have a voice. Demand at Carers’ Centres across the country is increasing substantially as local cuts bite and the welfare reform agenda unfolds. There are lots of warm words about the contribution that parent carers and unpaid carers make – this must be translated into firm commitments and actions.
Case studiesParent 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.
