Making personalisation work for people with autism

The Social Care Institute for Excellence explains how to deliver personalised services for people with autism and their families

The traditional service-led approach to social care has often meant that people with autistic spectrum conditions (ASC) have not received the right kind of help they need at the right time. Personalisation will benefit people with ASC by providing them with services tailored to their needs.

It should also benefit those often considered ineligible for social care, such as people with higher functioning autism and Asperger’s syndrome, who will be entitled to better signposting and advice services.

Assessment

The community care assessment process is highly complex and will need to be adapted to be more accessible for people with ASC. Staff should have autism awareness training to help people complete self-assessment forms if necessary.

Health action plans should be completed for all people with ASC to identify associated health needs. This will allow better support planning and will ensure the person can access all the funding streams to which they are entitled.

Person-centred planning

Person-centred planning (PCP) can be undertaken by self-advocates, families, PCP facilitators or brokers. Approaches such as “total communication” and “person-centred thinking” allow people who communicate in different ways to share their views.

People with ASC often have sensory problems and may be unable to concentrate or participate in an environment with too much sensory information. Planning may need to take place in a quiet room with a minimum of people present, with calm lighting and few distractions.

Group meetings may not be suitable for people with ASC because they can find the experience stressful. One-to-one work, where the person’s views can be explored in a less stressful setting with the information then fed into the plans, may be better.

Support planning and brokerage

Support planning can be undertaken by anyone: the person, family, paid staff, user-led organisations, brokers or skilled members of the community. Whoever supports this process must have a thorough knowledge of ASC.

The support plan will need to reflect the extra costs of some autism-specific providers.

Co-ordination of communication between all concerned is essential (the person, families, local authority departments and external agencies). Responsibility for this should not be left to the person with ASC or the family member.

Brokers may need to support local providers to be creative in meeting the needs and aspirations of the individual. People with ASC may not want to take part in activities in generic community settings. Some brokers have developed peer groups so that individuals can pool their budgets to share support workers or specialist services.

Young people and transition

Families need timely, accessible information during transition planning, and should be helped to understand what their options are when their child leaves formal education.

Change can be stressful for people with ASC, so careful planning, preparation and management of transition is important.

Employing personal assistants

Personal assistants or providers allow people with ASC to recruit staff with the specific skills and personalities that suit them. Some people with ASC employ family and close friends, who are best placed to provide ongoing, high-quality support.

There are some issues of which people with ASC, their families and those supporting them need to be aware.

• One to one support may be too intensive for both the person and their friend or relative, especially when the person has repetitive and challenging behaviours.
• Carers should have specialist autism training, regularly updated and refreshed, and this must be costed into the support plan.
• People with ASC need to have a basic understanding of employment practice − that they cannot, for example, end an employment contract without good reason. Advice from employment experts, user-led organisations and recruitment professionals may be helpful.
• Time to build relationships with carers is often essential and should be reflected in the support plan.
• Support staff should have formal employment contracts with the person with ASC or their representative and people with ASC should be encouraged to have criminal record checks on their support staff.

People with ASC can find it difficult to communicate, and may not have a full understanding of what is going on around them. They can also be very trusting, leading to financial vulnerability if they are handling their own budget.

This group of people often have difficulty understanding social relationships. They may need help to understand the difference between a friend and a paid supporter, and how to interact with them.

Managing the budget

People with ASC and their families do not have to manage the money they receive in their individual budget themselves. This can be managed through a direct payment to themselves or through a broker, a service provider or a care manager.

People with conditions that affect their capacity, like ASC, may need advocacy. This is good practice as it ensures someone ­independent is part of the person’s relationship network, and reduces the risk of mistreatment. Local authorities have a responsibility under the Mental Capacity Act 2005 to be satisfied that anyone making decisions on behalf of a person who lacks capacity in any given area is acting in their best interests.

Case study

Self-directed support changed Andrew’s life

Andrew is 32 years old, intelligent, motivated and focused. He also has Asperger’s syndrome. With the support of his social worker, Andrew decided to apply for self-directed support and received his indicative budget in September.

He started working with a broker to develop his support plan. First, an outline support plan was created by identifying the changes Andrew wanted in his life and the activities he wished to pursue. His broker discussed and developed these with him, and also introduced him to other options.

Andrew used a pictorial schedule to plan his ideal week and preferred activities. These included skiing lessons, dog walking classes, independent living classes, sponsoring a player from his favourite ice hockey team and a photography course. Andrew’s budget was approved two months later.

By being able to access the people, the places and the support he needs, Andrew’s self-esteem, motivation and zest for life have increased. He said recently he would never have felt so confident a few months ago. His mother says brokerage was particularly useful in helping Andrew and the family through the support planning process.

Source: National Autistic Society

Messages for practitioners

• Personalisation will benefit people with autistic spectrum conditions (ASC) because it offers them more control over their lives and more choice about the social care services they receive and how and where they are provided.
• People with ASC and their families need access to comprehensive information about service options, and expert brokerage to help them make wise decisions about care and support services.
• Service users with ASC may need help to communicate their views in person-centred and support planning.
• All staff employed to work with someone with ASC must be trained in ASC, which should be updated and refreshed regularly, and costed into the support plan.
• Service users with ASC may need advice and safeguards in an employer role because of communication and social vulnerabilities. Access to advocacy is good practice.

Further reading

• Research briefing: Access to social care and support for adults with Autistic Spectrum Conditions (ASC) www.scie.org.uk
• Guidance: Caring for Adults with Autism http://tinyurl.com/yf4gwxy
• Tizard learning disability review http://tinyurl.com/yjlrea9
• The Autism Act 2009 http://tinyurl.com/yegulvk
• Department of Health guidance on services for adults with ASC http://tinyurl.com/caa9gq

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Research abstracts

Author THORPE Patricia

Title Caring for adults with autism: guidance for support workers

Publisher National Autistic Society, 2009

Abstract This is aimed at those who are going to work with adults with autistic spectrum disorders in day and residential services or in supported living. It includes information about autism, communicating with people with autism, useful contacts and a chart to record behavioural concerns.

Author MacKENZIE Robin, WATTS John

Title The Autism Bill 2008/2009: Implications for children and adults with autism spectrum disorder (ASD) and their families, carers and professionals, and the need to differentiate between differences and disabilities.

Reference Tizard Learning Disability Review, 14(3), July 2009; ISSN paper 1359-5474

Abstract A review of the first autism-specific piece of legislation in England and Wales, which grew out of a private member’s bill. The bill became the Autism Act 2009.

Author Department of Health

Title Services for adults with autistic spectrum conditions (ASC): good practice advice for primary care trust and local authority commissioners

Publisher Department of Health, 2009

Abstract Building on current guidance, this highlights existing information and good practice for autism service commissioners in primary care trusts and local authorities.

This article is published in the 25 February 2010 edition of Community Care magazine under the headline Making Personalisation Work for People with Autism