Improving access to social care for adults with autism
How best to support carers
I think involving the families is incredibly important ... I think if you find a good family unit for goodness sake incorporate it because that will save everybody a lot of time and energy.Parent of someone with autism (7)
A carer's assessment is the vital first step in a carer accessing the support they need, yet too few carers for people with autism receive one (7). A diagnosis of any form of autism should act as a trigger to offer a carer's assessment to all those actively supporting the diagnosed individual. Carers' assessments can be offered even if the person with autism has refused an assessment for themselves.
The concern that some parents and carers feel about their family members' move towards independence can be lessened by the presence of supportive and skilled professionals, who must:
- listen, and take on board the experiences that family members have (7)
- recognise the incredibly in-depth, detailed knowledge that carers have (35)
- understand the love and sheer investment of emotion and time over many, many years that most carers bring to any discussion about the person with autism (31)
- empathise with the likelihood that carers may be drained from battles fought over the years, and may display a cynicism about the ability or willingness of professionals to help
- respect the different views a person with autism and their carer may have about the person's needs, and make clear in assessments who is expressing what opinion
- recognise that carers may be particularly anxious about the future, when they are no longer able to oversee what is going on for their family member
- plan early with families for what may happen, to help allay these concerns.
Some carers may need help in identifying all the support that they give, as it can be subtle and fluctuating. Carers sometimes live according to the person with autism's needs, and prioritise these over their own. They may do a lot of things unconsciously in relation to mediating between the person with autism and the outside world, such as answering all telephone calls, arranging appointments and taking care of correspondence.
The need for clear communication with people with autism is mirrored by the need to communicate clearly with carers, and avoid professional jargon, which can act as a barrier to collaborative working (31). This matters, because only by liaising with families can professionals develop a 'full, vibrant and functional picture of the individual with autism' (63).
Carers and family members quickly become expert in the person with autism they support. They often become hugely well informed in autism more generally, and many carers also become experts in how social care systems operate (7). This makes them ideal partners to work with services, at individual and organisational levels, to create better services not only for the person with autism they support, but also for the wider autistic population. Carers for people who have been recently diagnosed, however, may benefit from information and advice on autism.
Collective efforts by groups of parents can be a useful mechanism for achieving change, be it by advising local authorities/trusts over the provision of services, setting up mutually supportive group meetings or using the power of collective complaints to address poor access to services for people with autism (7).
Personalised services for the person with autism can offer carers a greater say in how things are run, but can also increase their workload, adding book-keeping and employment law to the knowledge and skills required for already hard-pressed people. Carers undertaking these tasks need proper support that suits them, be that training in how to do them, or quality brokerage services who can do the tasks instead.
Fulfilling and Rewarding Lives does not cover the separate needs of carers in great detail, but its calls for the proper application of existing policy and legislation to people with autism extend to carers, who would benefit from organisations simply applying carers legislation promptly and effectively ( 10). The revised Carers Strategy for England, 'Recognised, valued and supported' (64) emphasises the expertise that carers have, but stresses too that they should be entitled to dignity, financial wellbeing and a life beyond caring. Other key aspects of 'Recognised, valued and supported' are:
- better information on employment and benefits issues, and on the condition in question
- better services for the cared-for person
- less laborious assessment processes
- more, and more personalised, respite breaks
- more involvement of carers in service planning and delivery, and their input into Joint Strategic Needs Assessments*
- services that do not call for help whenever there is a problem ,but properly support a person, and allow carers time away from caring
- more flexible working for carers
- more training for carers.
Were all or most of these available to carers of people with autism, it would be reasonable to expect that the challenges of caring, and the attendant physical and mental health difficulties, may be lessened.
* Joint Strategic Needs Assessments are not applicable in Northern Ireland.
- Department of Health (2010) Recognised, valued and supported: Next steps for the Carers Strategy, London: Department of Health.