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What does the Care Act mean for people on the autism spectrum?

The Care Act 2014 recently came into force introducing a major shift in how the social care system in England works. In this article Dan Leighton, Policy and Parliamentary Officer for the National Autistic society explains some of the key changes and what they mean for people on the autism spectrum and those who support them.

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What does the Care Act mean for people on the autism spectrum?

The Care Act introduces a single law to replace existing complex legislation around adult social care, new duties for local authorities and partners, and new rights for service users and carers. These include new rules on who qualifies for publicly funded care and support, a stronger focus on wellbeing and prevention and new a safeguarding framework to protect from abuse and neglect. 

Care and support services, such as practical assistance at home and support engaging in the community, are often vital in enabling the independence and wellbeing of people with autism. Thanks to action taken by thousands of our campaigners, The National Autistic Society’s Careless campaign helped ensure the new rules on who gets support better reflect the basic needs of people with autism. This goes hand-in-hand with new Autism Act statutory guidance that was issued in March 2015, seeking to make sure that specific parts of the health and care system work for adults with autism.

Who will receive an assessment? 

The Care Act requires councils to make sure any adult with an appearance of care and support needs, and any carer with an appearance of support needs, should receive a needs assessment. If an individual requests an assessment they should receive one regardless of where they (or the person they care for/support) are on the spectrum, their IQ or financial situation. 

The Act also requires councils to undertake ‘transition assessments’ if a child, young carer or adult caring for a child is likely to have needs when they, or the child they care for, turns 18. This is regardless of whether the individual currently receives any support from children’s services. 

What happens during an assessment? 

The assessor will look at the outcomes that matter to the individual and the impact their needs have on their wellbeing. The assessment is how a local authority decides whether a person has eligible needs for publicly funded care and support. The council has a legal duty to ensure these needs are met. 

Assessors must be able to carry out assessments of particular conditions, which means they should be trained in autism. If they lack sufficient experience of autism, they are required to consult someone who does have experience. 

The Autism Act statutory guidance provides additional detail on the level of specialist knowledge and skills assessors are expected to have in autism. In addition to basic awareness and using appropriate communication skills for people with autism, these include: 

  • how autism may present across lifespan and levels of ability, and are defined and diagnosed, and the relevant pathways and screening tools
  • the common difficulties faced by individuals on the spectrum and their families/carers, including social and economic hardship
  • the impact of autism on personal, social, educational and occupational functioning, and interaction with the social and physical environment
  • current good practice guidelines (e.g. NICE Quality Standard 11) and local diagnostic and care pathways
  • current good practice guidance with respect to an individual with autism’s capacity to assess risk.

The council must arrange for some people to have an independent advocate with them at the assessment. This applies if you don’t have someone one else to support you (like a friend or family member) and you have substantial difficulty communicating what you want to say, understanding information given to you or making decisions about your support. 

Who will be eligible for care and support? 

The Care Act introduces a single national eligibility threshold that will apply across the country. Eligibility cannot be restricted beyond this level, which is comparable to the old ‘substantial’ eligibility banding used by most councils. 

The Care Act also introduces for the first time a duty on councils to meet the eligible needs of carers as well as the individual with needs for care and support. 

An adult with care needs will qualify for support if their needs assessment shows:

  1. the need for support is due to a physical or mental impairment, or an illness
  2. the person is unable to achieve two or more of a list of specified ‘care outcomes’ (see below)
  3. this has a significant impact on the person’s wellbeing.

A carer will qualify for support if their needs assessment shows: 

  1. the need for support is due to providing necessary care to an adult
  2. the carer’s physical or mental health is deteriorating OR are they are unable to achieve any of the specified care outcomes (see below )
  3. this has a significant impact on the carer’s wellbeing.

Eligible outcomes for adults with care and support needs

  • managing and maintaining nutrition
  • maintaining personal hygiene
  • managing toilet needs
  • being appropriately clothed
  • being able to make use of the adult’s home safely
  • maintaining a habitable home environment
  • developing and maintaining family or other personal relationships
  • accessing and engaging in work, training, education or volunteering
  • making use of necessary facilities or services in the local community, including public transport, and recreational facilities or services
  • carrying out any caring responsibilities the adult has for a child.

Eligible outcomes for carers with support needs

  • carrying out any caring responsibilities the carer has for a child
  • providing care to other persons for whom the carer provides care
  • maintaining a habitable home environment in the carer’s home, whether or not this is also the home of the adult needing care
  • managing and maintaining nutrition
  • developing and maintaining family or other personal relationships
  • engaging in work, training, education or volunteering
  • making use of necessary facilities or services in the local community, including recreational facilities or services
  • engaging in recreational activities.

How might the eligibility criteria address the specific needs of adults with autism?

Our Careless campaign helped to secure two key components to the final eligibility criteria that are particularly important for adults with autism.

Firstly, the expansion of ‘maintaining family or personal relationships’ to include developing relationships as well. One in four adults with autism tell us they have no friends and the type of support they most want is help to improve social skills – so this expansion is crucial.

Secondly, the eligibility criteria state that ‘being unable’ to achieve an outcome includes not being able to do so without assistance.  The Careless campaign made sure that ‘assistance’ includes the need for ‘prompting or supervision’ as well as physical assistance. Sixty five per cent of adults with autism told us they need prompting to wash, dress and prepare a meal. 

What happens after an assessment?

If someone are not found to be eligible for support, the Council must still make available written advice and information about how any needs could be met, reduced or prevented. This should include signposting to relevant services available in the community. 

If someone is found to be eligible for support, the next stage is to draw up a care and support plan, or in the case of a carer with eligible needs, a support plan. The individual concerned should be involved in developing this plan, with help from a family member or advocate if needed. The care plan should be reviewed by social services within the first three months, and then at least annually.

What about the rest of the UK?

The Care Act applies to England only. There are separate laws about social care in Wales, Scotland and Northern Ireland: 

Wales

Find out more at www.autism.org.uk/social-services-and-wellbeing-bill

Scotland

Find out more at www.gov.scot/Topics/Health/Policy/Adult-Health-SocialCare-Integration 

Northern Ireland

Find out about more at www.transformingyourcare.hscni.net  

Useful websites and resources

 

Author: Dan Leighton

Date added: 15 April 2015