The key to adults with autism be able to access appropriate care services and support is the eligibility criteria for that support. In 2003 the government therefore decided that there needs to be a fair and transparent system when allocating adult social care services to people in need. The Fair Access to Care Services (FACS) framework was so introduced to reduce inconsistencies across the country about who could receive support. The framework enabled councils to provide social care support in a fair and proportionate way that took into consideration the impact of the individual's needs, the wider community and the local council's budgets.
In 2010, after a consultation of the framework by Cutting the Cake Fairly (CSCI) in 2008, the 2003 FACS guidance was replaced by a revised guidance. The guidance, entitled Prioritising need in the context of Putting People First: A whole system approach to eligibility for social care - guidance on eligibility criteria for adult social care, England 2010, aimed to support fair and transparent eligibility criteria within the Putting People First policy of personalisation and prevention. It contains some key points that are relevant when assessing the community care needs of adults with autism. These include:
6. At a time when resources are tight, it is recognised that it will not be possible for councils to invest large amounts in prevention and early intervention schemes. Rather it is hoped that that councils and those applying this eligibility guidance will be prompted to think about prevention and early intervention beyond just adult social services. Suitably adapted housing smart technology and equipment, improved health care and joint working, greater benefits take-up and community support can all help to delay or avoid the need for care completely.
10. To effectively deliver the transformation envisaged in Putting People First and beyond, councils should have both a strong focus on the overall well-being of their communities and a recognition that people should be helped in a way that may prevent, reduce or delay their need for social care support. This shift in focus to community well-being and preventative approaches is also fundamental to the effective application of eligibility criteria. There is a growing evidence base that interventions can prevent or delay people entering the social care system and therefore produce better outcomes for people at a lower overall cost.
26. In the course of assessing an individual’s needs, councils should recognise that adults who have parenting responsibilities for a child under 18 years may require help with these responsibilities.
35. In Cutting the Cake Fairly, CSCI identified evidence that raising eligibility thresholds without putting in place adequate preventative strategies often leads to a short term dip in the number of people eligible for social care followed soon after by a longer-term rise. Councils should therefore avoid using eligibility criteria as a way of restricting the number of people receiving any form of support to only those with the very highest needs. Rather, they should consider adopting a strong preventative approach to help avoid rising levels of need and costs at a later stage. Early interventions can also improve general community well-being and wider social inclusion.
51. Councils must not exempt any person who approaches or is referred to them for help from the process to determine eligibility for social care, regardless of their age, circumstances, apparent financial means or the nature of their needs. To this effect, councils should avoid being too rigid in their categorisation of “client groups”. Rather needs should be considered on a person-centred basis recognising both individual need and taking into account the support that the individual’s family or support networks are willing and able to provide.
61. Councils should be aware that the risks to independence and well-being relate to all areas of life, and that with the exception of life-threatening circumstances or where there are serious safeguarding concerns, there is no hierarchy of needs. For example, needs relating to social inclusion and participation should be seen as just as important as needs relating to personal care issues, where the need falls within the same band. A disabled person who is facing significant obstacles in taking up education and training to support their independence and well-being should be given equal weight to an older person who is unable to perform vital personal care tasks – and vice versa. Councils should make decisions within the context of a human rights approach, considering people’s needs not just in terms of physical functionality but in terms of a universal right to dignity and respect.
64. In addition to people with long-term or fluctuating conditions, councils should be aware that there are other groups whose disabilities are such that they are at risk of being over looked in the assessment of eligible need. Such groups might include people who have very specific communication needs, or blind and partially sighted people who may be disadvantaged by assessors who are unaware of the impact of loss of vision. To maximise what individuals are able to do for themselves, councils should consider the benefits of making available rehabilitation services to those who have newly acquired disabilities before undertaking an assessment of longer-term need. Others with “hidden” needs might include people with autism, whose support needs may not be as immediately apparent or easily understood as those of other client groups. For example, it is known that many people with autism or Asperger syndrome have been refused assessment or access to support because their IQ is “too high” – i.e. because they do not have a learning disability. This is not acceptable. The Government is committed to publishing a new national strategy for autism by the end of March 2010, in recognition of the need for better understanding of the needs of people with autism and to support the development of high quality services tailored to their individual requirements
105. Undoubtedly, some people will not be eligible for support because their needs do not meet the council’s eligibility criteria. In reaching such conclusions, the council should have satisfied itself that the person’s needs would not significantly worsen or increase in the foreseeable future because of a lack of help, and thereby compromise key aspects of independence and/or well-being, including involvement in employment, training and education and parenting responsibilities.
For further advice on delivering assessmment for adults with autism, see: Saeki, M. and Powell, A. (2008). Social care: Assessment of need for adults with an autism spectrum disorder. The National Autistic Society. Read the report here.