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Looking after yourself

Adult siblings of disabled people can have a hard time looking after themselves. Many have experienced a life-time of coming second (third, or fourth…) to someone else’s needs. Now, more than ever, you must ‘put your own oxygen mask on first’ and avoid becoming burnt out and ill.

Face-to-face contact

In Scotland:

“Meeting others

Adults:

  • can meet socially, indoors or outdoors, in groups of up to 6 from no more than 2 households at a time
  • children under 12 from within the 2 households are not counted in the limit of 6 people, but the 2 household rule still applies
  • should meet no more than 4 other households a day
  • can stay overnight and use the toilet in someone else’s house
  • should stay 2 metres apart from anyone over 11 who is not part of your household

Children aged 0-11:

  • do not need to physically distance from others
  • do not have a limit on the number of households they can meet in one day
  • are not counted in the 6 person limit but the 2 household rule still applies

Young people aged 12-17:

  • should follow the same rules as for adults, except there is no limit on the number of households they can meet in one day

Adults accompanying children and young people must still follow the above rules on meeting adults from other households.

Everyone should follow good hygiene, by washing hands regularly.”

Read more here.

Advice on local lockdowns is available here.

In Wales:

“You can only meet socially indoors with people who you live with (your household) and members of your extended household if you have formed one. As of 14 September, meetings or gatherings indoors even within your extended household must be limited to 6 people (not including any children aged under 11).”

“Up to four households are able to join together to form an extended household. This means all the people living in these separate households become part of one extended household for the purposes of the coronavirus restrictions.

They will enjoy the same legal freedoms people living in individual households currently have – such as being able to meet indoors, have physical contact and stay in each other’s homes – other than that as of 14 September, meetings or gatherings indoors even within your extended household must be limited to 6 people (not including any children aged under 11). This applies in places like pubs and restaurants as well as in people’s homes.”

“Gatherings of up to 30 people are now permitted outdoors. But you should continue to maintain physical and social distancing from people outside your household, or extended household if you have formed one (subject to what is said about young children below).”

Read more here.

Advice on local lockdowns is available here.

 

In England :

“There is a legal limit on the number of people you don’t live with you are able to meet. When meeting with people you don’t live with you can socialise in groups of up to 6.” This applies indoors or outdoors.

Read more here.

Advice on local lockdowns is available here.

 

In Northern Ireland:

“Since 24 August, up to six people from two households can meet indoors in private homes.”

“Up to 15 people can meet up outdoors but you should maintain social distancing by being at least two metres apart.”

Read more here

Advice on local lockdowns is available here.

 

Face coverings

In Northern Ireland:

“Since 10 August, it has become mandatory to wear a face covering in a relevant place.  A relevant place generally means a shop or shopping centre.

As well as ordinary day to day shopping for items such as clothes, food or electrical goods, a face covering is required in any other indoor place where goods or services are available to buy or rent.

This includes, for example, a bookmakers, a food takeaway business or a dry cleaner.

It is not mandatory to wear a face covering in a business that is able to maintain social distancing by using a system of ticketing or appointments.  This might include, for example, a cinema, a hairdresser or a solicitor.

You do not have to wear a face covering in a bank or a business that operates like a bank.”

Read more here.

In Scotland, Wales, and England:

Face coverings are compulsory on public transport, in hospitals and GP surgeries, and in most indoor venues.

Some siblings may be worried their disabled brother or sister will be required to wear a face covering and that they may not tolerate it.

From gov.uk website:

“You also do not need to wear a face covering if you have a legitimate reason not to. This includes:

  • if you have a physical or mental illness or impairment, or a disability that means you cannot put on, wear or remove a face covering
  • if putting on, wearing or removing a face covering would cause you severe distress
  • if you are travelling with, or providing help to, someone who relies on lip reading to communicate
  • if you are travelling to avoid injury or escape the risk of harm, and you do not have a face covering with you
  • if you need to remove it during your journey to avoid harm or injury or the risk of harm or injury to yourself or others
  • if you need to eat, drink, or take medication on public transport
  • if you need to eat, drink, or take medication you can remove your face covering”

You can download an ‘exemption from face covering’ card that you can show on your mobile phone or that you can print off and carry on you.

You can also download optional badges/lanyards to promote ongoing social distancing.

From the Challenging Behaviour Foundation:

Information cards that can be printed and shown, explaining that someone is exempt from using facemasks: Coronavirus (COVID-19): Severe Learning Disability Information Cards

Care homes

Care homes and supported living providers should not have blanket policies that ban all visitors. Each person’s need and risk should be individually assessed. If you are seriously concerned about the impact that not seeing you is having on your disabled brother or sister’s mental health, you must discuss this with the care home.

Read more about visiting care homes in England, Scotland, Wales and Northern Ireland.

Other useful information:

Keeping in touch

Sibs’ Trustee and journalist Saba Salman writes about her experiences of contact with her sister during this time in this article. If you normally have face-to-face visits and you’re new to keeping in touch from a distance, here are some ideas:

Video calls:

Ideas for video calls:

  • Catch up over meal times – have a virtual breakfast, lunch or dinner together
  • Sing one song a day together – work your way through a favourite album or playlist
  • Dance or make up your own fitness workout that you can both do, such as chair exercises
  • Buy two of an item (such as bubble mix) and send them one. Over the video call, blow bubbles together
  • Read them a favourite story, or make up stories together
  • If a live call is hard, try recording short videos or sound recordings and sending them back and forth to each other

Ideas of small things to send in the post:

  • Postcard with a word or picture on it that makes them laugh
  • Favourite printed photograph of the two (or three or four…) of you as siblings
  • An item of clothing that might bring comfort, such as a scarf that smells like you
  • Wrap up a favourite bar of chocolate
  • A sensory item, like soft scented hand cream

If you’re both able to, here are some other ideas of free things to do online together:

Isolating together

Some siblings may be living or self-isolating at home with their disabled brother or sister. This might be your usual living situation, or you may have chosen to be together at this time.

  • It is possible for family members to be paid direct payments for providing care – read this advice from the government here
  • Read this advice from the Challenging Behaviour Foundation on escalating behaviour at home, and join their family support network to access ‘Carer Catch Ups’ and ‘CBF Behaviour Chat’. Click here and scroll down
  • Positive Approaches to Support is a new website for all family carers of someone with a learning disability/autism, and it has been developed jointly by professionals and carers. It has tips and advice on support, independence, communication and challenging behaviour during lockdown
  • Many siblings don’t recognise themselves as carers. However, if you are doing day-to-day tasks for your disabled brother or sister that you wouldn’t do for another adult who didn’t have their disability – then you providing care for them. Read the latest guidance from Carers UK.

Shielding

Some siblings may have been shielding with their brother or sister throughout lockdown. Shielding has been paused from 1st August, and people are no longer advised to stay at home. Some siblings may continue to shield.

We know that many adult siblings will be struggling with anxiety as lockdown and shielding restrictions ease. It’s hard stepping out again, and many are worried about the risks to their brother or sister. Take a look at this video advice from Mind.

You can read more information about shielding here.

Activities at home

Does your brother or sister have a learning disability and/or autism? Check out these resources, which include information and resources for coping with day-to-day life and ideas for activities too:

And for social care guidance:

Financial support

  • If you or your disabled brother or sister need extra help to pay for something there are many grants, funds, and charities that may be able to help – read more here
  • The government has confirmed that providing emotional support counts towards the Carer’s Allowance threshold of 35 hours of care. This can include sibling carers whose only contact with their disabled brother or sister to provide such emotional support, is through phone calls and social media. Read benefits advice from Carers UK for more info
  • Further general information from the government on coronavirus and finances (for example – unable to work, unemployed, changes to benefits, on furlough) is available here

Helping your brother or sister to understand the situation

It is very difficult for siblings to see their disabled brother or sister upset and confused by a situation they cannot understand. Here are some resources that may help:

  • Dimensions have listed all their coronavirus easy-read guides, social stories and Books Beyond Words here, explaining the virus, why people can’t visit and going out (e.g. to use supermarket)
  • Learning Disability Wales have easy-read information and resources in English and in Welsh
  • Hft have produced a video guide to coronavirus
  • An easy-read guide to avoiding scams during the outbreak, from Inclusion North
  • Sign Health have daily update videos in British Sign Language (BSL) with subtitles

Changes to care packages

Many adult siblings will have seen major changes to their disabled brother or sister’s day-to-day care and support. Some siblings may have seen other changes in their brother or sister’s care package, due to the Coronavirus Act.

The Coronavirus Act 2020 is a law designed to help the UK cope with the pandemic. It allows a number of changes to current rules, including changes to local authority provision of care and support packages in England and Wales. This is to allow local authorities to spread resources more evenly and respond to the most urgent cases.

Key points:

  • Local authorities must still follow the relevant care law (in England this is The Care Act 2014 and in Wales this is the Social Services and Well-being Act 2014)
  • Before any changes take place, local authorities must prove that to continue to follow the relevant care law would put lives at risk (for example, by proving that they no longer have enough carers)
  • Local authorities must report this decision to the government and tell service users and care providers

The Coronavirus Act only affects certain parts of care law, not all. Local authorities don’t have to:

  • Complete detailed financial assessments (but they must make sure that any charges are fair overall, and they must complete an assessment after the crisis is over)
  • Complete detailed needs assessments (but they must still respond as quickly as possible, respect a person’s human rights and respect their needs and wishes)
  • Complete detailed care and support plans (but they must do enough planning to make sure human rights are respected and lives are not put at risk)
  • Meet all eligible needs (but they must meet the most urgent needs)

Read the full Coronavirus Act here. An easy read version is available here. A video guide is available here. More information from The British Institute of Human Rights is available here. Read the guidance for local authorities on Care Act easements here.

What next?

  • You will need to contact the local authority where your disabled brother or sister lives to get the most up-to-date advice on what they are currently able to provide
  • It is possible for family members to be paid direct payments for providing care – read this advice from the government here
  • Your local advocacy service may still be running – contact them if your brother or sister needs support. Voiceability have produced this myth buster on people accessing advocacy during the pandemic
  • More information at Carers UK – A-Z of changes to benefits, assessments and support – COVID-19

Have your say

Many adult siblings are involved in their disabled brother or sister’s care, and it is important that sibling voices are heard. You can do this by taking part in these two surveys:

1. Getting care

In Control and Disability Rights UK have set up a register to record people’s experiences of getting health, social care and treatment for Covid-19 during the time of the pandemic. They want to hear the experiences of disabled people and people with long-term health conditions, their carers and family members, both good and bad, of getting support. Report your experience of getting care or treatment during the Coronavirus (COVID-19) pandemic here.

2. Human rights

The UK Parliament’s Joint Committee on Human Rights (JCHR) is currently holding an inquiry into the UK Government’s response to Covid-19. This inquiry is looking at how people’s human rights may have been affected. This survey is for people who access (or are trying to access) care and support, their family members and people who care about them. You can take part in the survey here.

Coronavirus – sibling experiences

You can read about the experiences of other adult siblings during the pandemic, here.

Going into hospital

Emergency planning

No sibling wants to think about their disabled brother or sister being admitted to hospital. It can be an unbearable thought. But it is worth remembering that thinking about it does not make it more likely to happen, it can only help you to be more prepared.

At this time, some adult siblings of people with learning disabilities and/or autism are supporting their brother or sister to put an emergency plan in place. We acknowledge that this is not an easy topic for siblings to face and can be very difficult to raise with parent(s) too.

Resources that may help:

Hospital visiting

Most hospitals have stopped or significantly limited visits. You will need to call the specific ward and speak to the nurse in charge to discuss whether you can visit your brother or sister in hospital or not.

Hospital care

Mencap have produced information for healthcare professionals, to help treat patients with a learning disability during the coronavirus outbreak. If you are worried about the level of care your disabled brother or sister is receiving and you feel it is a safeguarding concern, remember that you can still report this to the hospital safeguarding team.

The National Institute for Health and Care Excellence (NICE) have updated their guidance on COVID-19 and critical care (also known as intensive care). The new guidance states that people with stable long-term disabilities (for example, cerebral palsy), learning disabilities or autism should not be screened using the usual Clinical Frailty Tool. Any decisions about whether a person with those conditions such be admitted to critical care, should be made on an individual basis. You can read more about these changes here and read the full guidance here.

Radiant research have produced guidance documents on Covid-19 and learning disability (also referred to as ‘intellectual disability’).

Do Not Attempt to Resuscitate (DNAR) decisions

Some siblings have told us that the coronavirus outbreak has prompted their disabled brother or sister’s care home, supported living setting or GP to ask them about a DNAR decision. This can be extremely upsetting for siblings and can feel very ‘out of the blue’.

It is important to remember that blanket policies about DNAR decisions cannot be made. For example, a doctor cannot say that all people with a particular condition should have a DNAR in place. Any DNAR decisions must be made on an individual basis, and involve the individual and their families.

More information:

Bereavement

Sibs offers heartfelt condolences to all adult siblings who are grieving during this incredibly difficult time. At a time when you most need company and a hug, you may not be able to have this. Feelings of loneliness are heightened. For siblings who may have spent a lifetime putting their needs aside for the benefit of others, this is especially hard. Some siblings will also be supporting a disabled brother or sister through loss and grief too.

Rory Kinnear shares his experiences in this Guardian article “My sister died of coronavirus. She needed care, but her life was not disposable”

Coping with grief during the coronavirus outbreak:

Coping with the loss of your disabled brother or sister

Issues specific to the loss of a disabled brother or sister:

  • Experiencing disenfranchised grief i.e. the way you grieve is not considered socially acceptable or the grief isn’t considered worth it. People may say things like: ‘Her health has always been bad…’ ‘He wasn’t expected to have a full life expectancy…’
  • Loss of role and identity – You may have been one of the main caregivers for your brother or sister and may feel a loss for the caring role you undertook
  • Anger – You may feel very angry that services or treatments were not available for your brother or sister, or that he or she was treated with less dignity than others in hospital or a care home
  • Guilt – You may feel guilty about things like – how much time you have spent with your brother or sister; resentment about care tasks; relief that you will not have to care in the future; having survived…

Coping strategies:

  • Give yourself time. There is no set time or pattern for grief and it varies for everybody. Be patient and take the time you need, without feeling pressure
  • Find a way to express your grief. For some siblings, this will be talking to a close friend. For others, this will be keeping a diary, or using music or art. Some will put together a memory box. Find a way that works for you. There is no ‘right’ or ‘wrong’ way
  • Keep healthy. Looking after your physical health is a good way of keeping you mentally healthy. Take regular exercise and make sure you eat and sleep as well as you can

NHS coronavirus bereavement helpline

Call 0800 2600 400 (open every day from 8am – 8pm). The nurses on the helpline can give you advice, guidance and practical support during this difficult time.

You are not alone. Click here for more information and coping strategies.

Remember you are not alone during this time – stay in touch with us on Twitter, Facebook, Instagram, LinkedIn and through our mailing.

You can download all of the above information as a PDF here: Sibs - coronavirus - useful information for adult siblings.

You can give feedback on this page here.

This page was last updated: 21st September 2020