How can I get support for a family member who lives with autism?

For Autism Awareness Week (29 March – 4 April), Lifeways is celebrating the role of autistic people in our society. See the links below to find other autism-related content.

We know it can be difficult to find the right level of support for a family member who lives with autism.

Often, the world of support outside of the home seems like a daunting new territory – with lots of decisions to be made.

As autism is a spectrum, this means everybody who lives with autism is different. While some autistic people need little or no support, others may need help from a family member or support worker every day.

Thankfully, there’s plenty of help available to you and your family member to make the right choice.

1. First steps

If you are new to social care, or have never had a support package before, the very first step is to contact your GP.

When you’ve seen your GP, they will allocate you a social care professional, who’s usually a social worker employed by your local authority or council. If you’re not sure about your local authority or council, follow this UK Government website link: Find your local council.

2. Meeting with a social worker

Once you and your family member have met with your social worker, the social worker will then complete a needs assessment. This is a simple checklist to identify the needs of the person needing support, and decide if a full healthcare assessment is required. 

3. Getting assessed

At Lifeways, we're able to support you through this process if needed, so please do get in touch with us if you'd like any advice. Please note that we provide support for adults aged 18 and onwards – including people making the transition from children’s to adult services.

Lifeways will then work with your care professional to arrange a full assessment. Our local Enquiry Referral and Assessment Manager will visit you and your family member and any other key people. Our team member will ask several questions, to really understand the type of support needed  - and the wishes and goals of your family member.

Here are eight key areas we collect information on:

1. Communication and decision-making

2. Health and well-being

3. Daily activities

4. Living safely and taking risks

5. Relationships

6. Finances

7. Community access

8. Emotions and behaviours

As we know that this can be a difficult or stressful time for you and your family member, we’re experts at recognising what pace we need to move at. This means some assessments take place over days or weeks, rather than in one session.

4. Completing assessment

Then, once we’ve completed this assessment, we carefully review the information we've gathered, and assess how much support might be needed in each area – for example, your autistic family member may need support with daily activities, living safely, and managing emotions.

This helps us to create a support and funding proposal that is tailored and fits the needs of the individual.

5. Securing funding

In the UK, most social care services for adults who live with autism and other needs are paid for by local authorities.

At Lifeways, we receive funding for our services from a variety of sources, including personal and individual budgets, local authority and health funding.

Working out ‘who pays for what’ can be confusing – but we can help you understand this system and make sure you’re getting the maximum support available for your family member.

6. Deciding on a move-in date

All the relevant information we’ve gathered on your family member will be given to your local authority or council for consideration. The local authority or council will then confirm their decision in writing and discuss the suggested support plan with you and your family member.

There is no pressure, or any obligation, from Lifeways to make a final decision on how your family member receives support. 

Before a final decision is made, you can visit any suitable Lifeways supported living houses or apartments (when national coronavirus restrictions allow), and the family member needing support can even stay overnight to see if they feel comfortable.

Once your family member is happy with a service, and the Support Team there, we can set a move-in date, and will be on-hand to support you and your family member through the whole transition process to make the move as smooth as possible.

To find out more about Autism and supported living, please read our guide on supported living for adults with Autism.

What does Lifeways do?

Lifeways is the UK’s largest team of support professionals providing support for adults in the community.

To find out more, visit us on our website, or follow us on social media

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Useful links:

• The Lifeways Family Guide is a general look to securing support for your family member. It's also in PDF form, and is easy to print out.
• The NHS website contains useful, easy-to-read guidance on Autism.
• The National Autistic Society – which leads events across the country, including Autism Awareness Week – has lots of resources to help guide you and your family member, including this guide to social care for adults in England.
• The Care Quality Commission (CQC) is the government’s regulator for all health and social care services in England. All our Lifeways offices are registered with the CQC and you can access reports on and find links to them on our website, lifeways.co.uk. Please note that Scotland and Wales have separate regulators. Here are the websites of Scotland’s Care Inspectorate and Wales’ Care Inspectorate.