Barriers to personalising autism services
Autistic people who used a personal budget were generally positive about the personalisation of their social care, with over 80 per cent viewing the budget as working well, or well ‘to some extent’. However, until recently, very few autistic people had access to a personal budget, and further research will be needed to see how successfully they are implemented under the Care Act 2014.
Various barriers to personalisation were cited by people in our research:
- the bureaucracy involved in applying for something about which they knew relatively little: ‘I expected the application process to be stressful and probably with no net financial benefit’
- concern that personalisation would be used by funding authorities to cut care packages
- anxiety that the underpinning philosophy of choice and control was being undermined by the insistence that all users of social care should live independently
- an underdeveloped market for personalised support for people with autism
- fear that personalisation would increase the carer burden, with extra bookkeeping and employment problems.
- fear of financial exploitation.
These concerns reflect wider anxieties about how people with autism will be affected by personalisation. Certainly there are barriers:
- Eligibility criteria and charging guidance may act as a barrier to any social care, not just personalised services.
- At a time of cuts, the costs of providing really good support to people with autism might not be reflected in any care packages, including personalised ones.
- Self-assessment forms and resource allocation systems need to be subtle enough to capture the nuances of autism, given the difficulty people may have in conveying their needs accurately, unless supported to do so.
- Personalisation may lead to the closure of some existing services, which autistic people may find disconcerting, and the micro-commissioned services that replace them are not yet established as being able to meet autistic people’s needs.
- Personalisation may lead to greater social isolation and vulnerability as established groups are closed down.
- People with autism may find some issues inherent in employing personal assistants difficult, in particular maintaining appropriate boundaries.
- There may be more gaps in service delivery due to sickness/staff training, when people have just one or two people who support them. Good planning needs to be in place to prevent this.
- Professionals sometimes lack sufficient knowledge of personalised options, or of autism, to make personalisation work.
- The world of person-centred planning uses vague and metaphorical terms such as ‘health passports’, ‘dreams’, ‘doughnuts’ and ‘circles’, which often make no sense to an autistic person. Adjustments therefore need to be made.[5, 65]
- Some professionals see personalisation as a passing fad, a threat or a criticism of existing ways of working, and of them by extension.
- Employing a personal assistant to work alone with a person with autism could be overly intensive for both parties.
- Budgeting can be hard for people with autism, and this combined with difficulties understanding the motivations of others may make them vulnerable to exploitation.
Research  found that person-centred working can also be hampered by inflexibility within systems, poor communication between agencies and with those who use services and their families, and ever-tighter financial restrictions. Families have expressed the view that there is a danger that personalisation can fail to focus on the person within their social circle, and leaves parents and siblings feeling cut off from those receiving support.