Guidance on supporting autistic people during the coronavirus outbreak

The Government has published guidance for unpaid carers on supporting people during the coronavirus outbreak, including what to do if you or the person you support needs to self-isolate or is in the vulnerable category.

An unpaid carer is a person who provides support to someone in their lives, usually a family member or friend. We have created a list of the most important things for unpaid carers to know. We’ll continue to update this with any new announcements.

Changes to benefits available for unpaid carers

During the coronavirus outbreak, the Government has introduced two temporary changes to the benefits that unpaid carers can access:

If you are an unpaid carer you can continue to claim your allowance even if you have a temporary break from caring because of coronavirus – this could be because the person you provide support to develops the virus, you develop it or you have to self-isolate because of it
Providing emotional support to a disabled person now counts towards the minimum of 35 hours of care a week that you need to provide

Guidance for unpaid carers who are supporting autistic adults during the coronavirus outbreak

In addition to temporary changes to benefits for unpaid carers, the Government has also produced guidance for unpaid carers of autistic adults. This sets out what you should do in a number of circumstances during the coronavirus outbreak:

Planning for an emergency

The Government recommends that you create an emergency plan with the person you support. This can be used in circumstances where you may be unable to help support the person as you usually would. The emergency plan should include:

name, address and any other contact details of the autistic adult you support
who you, and the person you look after, would like to be contacted in an emergency
details of any medications the person you support takes
details of any ongoing treatment the person you support receives
details of any medical appointments the person you support has that need to be kept

You might also want to complete our Health Passport with the person you support, in case they do need any medical treatment or have to go to the hospital during the coronavirus outbreak. The passport helps autistic people to tell medical professionals what support they need.

The Government’s guidance also says that when you’re discussing care arrangements, you should consider whether you or the person you support is clinically ‘vulnerable’. If you are:

aged 70 or older
aged under 70 but with a specified underlying health condition (to understand how this is defined please see our guidance on Going Out and Shielding)
pregnant

you are more likely to be very unwell if you get the virus so are clinically ‘vulnerable‘.

Collecting prescriptions if you are self-isolating

If you normally collect prescriptions for the person you care for, you will not be able to do this if you are self-isolating. Most pharmacies provide a home delivery service, so you should see if they can deliver and, if not, whether there is another scheme running locally to help you get these, for example a volunteer who could collect and deliver.

Care workers coming into homes

It’s a really unsettling time, and we’ve heard that some autistic adults don’t feel comfortable having their usual paid care worker coming into their home. The Government has told home care providers what they need to do to keep people safe, including wearing protective equipment and taking extra precautions around hygiene.

If the person you support doesn’t feel comfortable with someone coming into their home at this time, tell the council or their care provider. They should work with you to create a plan to make sure the person gets the support they really need during this time.

People living in care homes

You should liaise with the care home to understand what arrangements they’re putting in place to make sure the person you support can continue to keep in touch with you – either over the phone or online.

How do I keep a person who is shielding safe when giving care?

If the person you support is in the shielding category, you should:

only provide essential care
wash your hands when you arrive at their house if you don’t live together. Wash your hands often, using soap and water for at least 20 seconds or use hand sanitiser
put used tissues in the bin and wash hands afterwards
not visit if you feel unwell – make alternative arrangements in line with the emergency plan you’ve put together
provide information on who the person you support should call if they feel unwell and instructions on how to use the NHS 111 online coronavirus service

Maintaining your own health

If the person you support starts showing symptoms of Covid-19, how you should respond will differ depending on your own health situation:

You should always follow the stay at home guidance relevant to you. If you are in a clinically ‘vulnerable’ group you need to be particularly strict at following the guidance on social distancing. If you are in the group that needs to shield, it’s really important that you avoid anyone displaying symptoms and work out alternative care arrangements. This may not always be possible, in which case you should contact your local authority or health care provider – contact NHS 111 if you’re not sure what to do.
The same measures are applied if you start displaying symptoms and have responsibilities as an unpaid carer.

Making alternative care arrangements

If you’re in the situation above and can’t provide support as you usually would and you need to organise temporary care, it is important to act as quickly as possible:

Contact friends and family to see if they could temporarily help.
If this is not possible, contact your local authority or health care provider – contact NHS 111 if you don’t know how to do this.

Local carers’ support organisations may also be able to help you with emergency planning – Carers UK is a great source for further information.

What does the National Autistic Society think about these changes?

We know this is a particularly difficult time for autistic people and their unpaid carers. We will keep speaking up and showing the Government the impact of the coronavirus outbreak on autistic people and their families during this time. Please share your experiences, and any worries or concerns you have with us, by emailing stories@nas.org.uk.