Improving access to social care for adults with autism
The barriers to the benefits
Of the people with autism with whom we spoke, those who used a personal budget were generally positive about the personalisation of their social care, with over 80 per cent of them viewing the budget as working well, or well 'to some extent' (7). However, very few people we surveyed (11) had access to a personal budget, and as local authorities continue to roll them out, there is a challenge to be met in ensuring that people with autism take advantage.
Various barriers to personalisation were cited by people in our research (7):
- the bureaucracy involved in applying for something about which they knew relatively little: 'I expected 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. This was not necessarily scepticism about personalisation as a concept, but a concern that, as switching to a personal budget might involve a review or re-assessment of needs, it would be used as an opportunity to reduce support
- 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 book-keeping 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 that people with autism may have in conveying their needs accurately, unless supported to do so by knowledgeable people and well-designed tools.
- Personalisation may lead to the closure of some services, which people with autism may find disconcerting, and the micro-commissioned services that come in their place are yet to establish themselves among people with autism as able to meet their needs (23).
- Personalisation may therefore lead to greater social isolation and vulnerability (6).
- People with autism, who find the subtleties of human interaction confusing, may find some issues inherent in employing personal assistants difficult. Maintaining appropriate boundaries, particularly if employing family or friends, may be particularly challenging.
- There may be more gaps in service delivery due to sickness/staff training, when people have just one or two people who support them. People should plan what to do in this event.
- Professionals sometimes lack sufficient knowledge of personalised options, or of autism, to make personalisation work for people with autism (20).
- The world of person-centred planning uses vague and metaphorical terms such as health passports, dreams, doughnuts and circles.
- 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.
Person-centred working can also be hampered by inflexibility within systems, poor communication between agencies and with users and families and by ever-tighter financial restrictions (54).