This week, the Care and Support Alliance published a new report on the pressures social workers face to provide the right help for those who need care and support, and the impact that underfunding has on older people, disabled people and their carers.

Social Worker

Ahead of that report, our charity spoke to Sue* a social worker working with autistic adults. She told us about the challenges she faces getting the right care for autistic adults in her area, including:

  • Getting new packages agreed and being able to justify why a more expensive but specialist autism provider might be needed
  • Finding support workers with the right communication skills to work with autistic people
  • Explaining why a short term package of care designed to support disabled adults to ‘relearn’ lost skills may not be appropriate for an autistic adult. 

Sue's story

I work with autistic adults with a range of needs. Often, these needs are best met by help from social care: from help with washing and dressing to help with participating in the community.

Many of the autistic people I work with have to contribute to their own care costs. This often has to come out of their Disability Living Allowance or Personal Independence Payment – which is replacing DLA for adults.

Some will choose not to get help from social care because they need their benefits to pay for other essentials. Their social care needs will therefore go unmet, leaving them isolated and vulnerable.

Getting new packages agreed: be prepared to fight

Whenever a social worker has to get a new care package agreed, you need to be prepared to fight for funds.

I’m frequently asked to justify why I’m recommending a specific provider – for example, if the staff are trained in behaviour support techniques for autistic people, rather than the cheapest provider.

I’m generally able to get my recommended packages agreed. However, I have years of experience of working with autistic adults and articulating clearly why social care is an urgent priority for them. Colleagues who are less familiar with autism have found themselves less able to pitch the preventative benefits of social care packages.

It can be hard to find the right care workers for autistic people

The funding crisis also impacts our ability to find motivated care workers and agencies.

I’ve worked with fantastic, motivated staff – but understandably, care workers can feel compelled to leave their roles. For autistic people, it can be particularly difficult to have to keep forming new relationships.

Another particular problem is finding staff who are able to meet their different communication needs, which can be difficult when a care worker has poor literacy or comprehension skills themselves.

‘Enablement’ used to justify shorter care packages

Local authorities are encouraging ‘enablement’ at the moment: putting the focus on learning or relearning skills to live independently, by giving more intensive support for a short period of time

This has meant autistic adults are being given inappropriately short (one to six month) care packages, and puts undue pressure on people to make do without. I’ve found that this affects autistic adults disproportionately. A clear example of how this has changed is in support for people on the spectrum who have hoarding tendencies, which can lead to ill-health and housing challenges.

The Care Act had greatly improved getting specialist packages for these people. However, you need to have a social worker involved who can advocate for slower-paced interventions (rather than 'blitz cleaning') and it needs to come to their attention prior to eviction orders.

This, and other examples, are directly related to the under-funding of care and the Government's focus on making people more 'resilient' and 'less dependent' on long-term services. Autistic people are less able and less likely to engage with these quick turnaround times.

The lack of emphasis on relationship/trust building between 'customers' and social care staff is particularly challenging for autistic people. Even the terminology used, ‘customer', can feel very depersonalising to those who try to access services.

Are you a part of our care system, be it as a care user, carer, social worker or family member? The Care and Support Alliance, of which The National Autistic Society is a member, wants to hear your stories.

*Names have been changed in this article to protect identity.