COVID-19 guide for carers and family supporting adults and children with learning disabilities or autistic adults and children

Updated: July 2020

This is a guide to help family members and carers living with and supporting adults and children with learning disabilities, or an autistic adult or child, through the COVID-19 crisis. Its aim is to assist carers to carry on giving good, safe support to their family members during the pandemic. The guide focuses on families who are living with an autistic person or a person with learning disabilities; if your family member lives away from the family home, you may also wish to look at our guide for care staff.

People with learning disabilities and autistic people enjoy the same human rights as the rest of the population. Families play an important role in promoting and upholding these rights, so that autistic people and people with learning disabilities can enjoy lives that are rich, fulfilling and fully included in society. While there may be some changes to the Care Act locally and to children’s legislation, local authorities are still expected to take all reasonable steps to continue to meet people’s eligible care and support needs, and the support needs of carers. Social care is underpinned by human rights, and this has not changed. During the COVID-19 pandemic, however, everyone’s lives are being limited, and everyone is having to make changes to the way we live together and in communities, to combat the virus.

This public health crisis is having an acute impact on those with care and support needs, carers and staff. The care and help available may be limited compared with usual provision, because more people are needing assistance, and staff may be ill or self-isolating. Autistic people and people with learning disabilities are likely to be worried about their own health, and that of their loved ones, while also having routines interrupted, and access to friends or colleagues halted. Those providing support to them will be concerned about their own and their family’s health too, and may be facing knock-on effects of the pandemic such as lost income or jobs. Family members may be spending more time in the immediate company of the person with learning disabilities or the autistic person than they have done for some time.

Helping the person to understand the changes

The current health crisis has increased confusion, fear and anxiety for everyone, and inevitably it will bring additional challenges when supporting autistic people and people with learning disabilities. There may be a need for detailed planning if people are used to specific routines, such as going to college or school, and are unsettled by change.

Each person is an individual, as family carers recognise better than anyone. It is important therefore to think about what your family member enjoys normally, what strategies and plans typically work when things are not going well, and to continue to provide calm and reassuring support.

Much has been changed by the coronavirus, but the personality, preferences and interests of your family member will likely not have done. So make sure they are included in discussions and decisions, so they’ll have the best chance of understanding what is happening, and of staying in control of their lives as much as possible.

It may help to think about what strategies have been used before if the person was going, for example, on holiday or to hospital.

  • Emphasise those things that can remain normal.
  • Encourage the establishing of daily routines, including exercise, social contact, and good sleep routines.
  • Consistency: who normally supports the person with particular tasks? Is it possible to maintain that or keep in contact in some way? If not, how can this be explained?
  • Try to explain in simple terms why things are changing. e.g. there is a virus that might make us ill so we are trying to keep safe.
  • Explain that the restrictions are not forever – we can go back to normal when the risk has passed.
  • Use accessible resources from organisations such as Learning Disabilities England, the National Autistic Society and Books Beyond Words.
  • Can you keep a list of all the things the person wants to do once restrictions are lifted, so the person can see these have not been forgotten?
  • Is there anything that helps to calm the person that can help e.g. listening to music, gardening or baking?
  • The World Health Organisation (WHO) recommends that people exercise daily. Plan with the person taking a daily walk or run.

Here are some resources that may be helpful:

Severe learning disability and behaviour that challenges

If the person in your family has a severe learning disability or exhibits behaviour that challenges this may be a particularly difficult time. The Challenging Behaviour Foundation have put together a range of information and resources for families and carers of people with severe learning disabilities and/or behaviour that challenges. This includes some advice on what you might do if challenging behaviour escalates at this time, and some FAQs on coronavirus and the law.

Social distancing and going out

Restrictions on going out are gradually being lifted, but the coronavirus is still in general circulation. Therefore we should continue to stay at home whenever possible to minimise the chances of catching and spreading COVID-19. The Government has introduced new powers to enforce this and if someone is not following the restrictions the police can order them to go home, and fine them if they refuse. Those providing support in the family should use their usual methods of communication that are effective with the individual, to help them understand the restrictions.

From 4 July 2020, the restrictions allow us to leave the house for some things:

  • to go shopping for food and other essentials
  • for medical reasons and health appointments
  • to travel to work (but only if you cannot work from home)
  • for exercise
  • to socialise outside in small groups of up to six people from different households, as long as you follow the social distancing guidelines
  • to attend a place of worship for individual prayer.

When you go out, you should still:

  • Stay 2 metres (6ft) away from people who are not from your household.
  • Wash your hands as soon as you get home.

On 24 July the law changed to make wearing a face mask compulsory in England on:

  • public transport
  • in indoor transport hubs (airports, rail and tram stations, bus and coach stations, etc.)
  • shops and supermarkets
  • indoor shopping centres
  • banks, building societies, and post offices.

However, there are some exceptions, including for people who need to lip read, and if wearing a mask might cause someone severe distress. The Government have produced some cards and badges which you can carry to explain why you cannot wear a face mask. Jane Green and SEDS have also produced some exception cards, too.

In England, single adult households – in other words adults who live alone or with dependent children only – can form a ‘support bubble’ with one other household. All those in a support bubble will be able to spend time together inside each other’s homes, including overnight, without needing to stay 2 metres apart. You can only form a support bubble with one other household.

Your household (including your support bubble if you have one) can meet with one other household in any location (indoors or outdoors), but you should still socially distance from anyone not in your household or bubble. You can only meet with one household at a time, but it does not always have to be the same household - you can meet with different households at different times.

Non-essential shops, sports and exercise facilities, and public buildings such as libraries and community centres, are starting to re-open. However, you should still continue to follow social distancing guidance that remains in place. Local areas may bring in stricter restrictions if coronavirus cases increase.

People in Wales, Scotland and Northern Ireland should follow the guidance specific to their country.

Alongside the easing of general restrictions the Government has updated the shielding guidance for people in the clinically extremely vulnerable group, and people caring for them.

If the family member you are supporting would normally exercise outside, but they cannot do so in the same way now, then think about how this can be handled with reduced risk. Are there any quiet open spaces near you? Could you go out at a quieter time? Do you have a garden or could you exercise indoors? Perhaps following a YouTube exercise video would help. Some organisations have come up with indoor activities which people may enjoy:

Although restrictions are lifting, other tasks such as shopping or collecting prescriptions may still be more stressful than usual, with long waits and too many other people around. It also increases the risks of becoming infected by Covid-19. It may not be helpful to take your family member with you, even if that is something you would normally want to promote in the interests of developing skills and independence.

See if you can have essential items delivered to your home. Most pharmacies will deliver to those with additional needs, and supermarkets now have some prioritisation for people with additional vulnerabilities. Friends and neighbours may be willing to assist, and there is useful government information.

Local authorities and the NHS have developed teams of staff and volunteers to support people who need additional support during this time. You can find local support groups via Covid 19 Mutual Aid UK. There may also be other local groups, locatable via social media such as WhatsApp or Facebook, where people can find support, and neighbours willing to help out. It is a good idea to approach your local authority, who are strategically supporting these groups, so you can access safe, appropriate support.

Maintaining relationships

It is important that people are supported to maintain their relationships with family, friends and partners.

Where people with learning disabilities and autistic people were living with their partner prior to the lockdown, that can obviously continue (with support where necessary).

If people were not living together but did have regular face to face contact with their partner, this will clearly be a difficult time for them. Depending on their living circumstances, and the circumstances of their partner, they may be able to form a support bubble, and so see each other without the social distancing restrictions. If that does not apply they may need additional support with their emotional life. People can continue contact via telephone and video calls, and where appropriate be given the privacy to use technology to continue to have an intimate relationship with their partner. The adjustments to the social distancing guidance in England mean that people can now arrange to meet one (or more) person who is not from their household, from 4 July they can meet indoors as well as outdoors, but must still remain 2 metres (6 ft) apart if they are not part of the same support bubble.

Friendships and relationships with family members outside the home are equally important.

The relaxation of social distancing measures mean that you can now meet in groups of up to six people from different households, but you must meet outdoors and remain 2 meters apart. Autistic people and people with learning disabilities are making use, like the rest of the population, of various video call facilities and other ways to keep in touch with friends, colleagues and loved ones, and this should be supported wherever it is what the person wants. Learning Disability England have a range of resources for staying in touch and socialising online, including an easy read guide to using WhatsApp.

But despite everyone’s best efforts, your loved one may experience loneliness as a result of the reduction in opportunities to socialise, connect with people, take part in physical activity, and everyday cultural and faith experiences. They may experience anxiety about the virus outbreak. Some useful resources to support them are:

Children and young people

Changes to education health and care (EHC) plans

On the 30 of April the Government announced temporary changes to the law on EHC needs assessments and plans to give local authorities, health commissioning bodies, education settings and others more flexibility in responding to the demands placed on them by coronavirus.

The changes to the law mean that the duty on local authorities or health commissioning bodies to secure or arrange the provision is temporarily modified to: a duty to use ‘reasonable endeavours’ to do so.

It is important to note that key elements of the EHC needs assessments and plans process are unchanged. A local authority must still consider requests for a new EHC needs assessment, must still secure all of the required advice and information in order to be able to issue a plan, and must have regard to the views and wishes of a child, the child’s parent or a young person when carrying out its SEND functions under the Children and Families Act 2014.

Government has published guidance on these changes, and there is a joint ministerial letter to parents and carers explaining the changes.

Attending schools and colleges

During the coronavirus outbreak, schools have been closed, except for children of critical workers and vulnerable children. This includes children with an EHC plan whose needs cannot be met safely in the home environment.

As schools and other educational settings prepare for wider opening, they should continue to offer places to vulnerable children and young people and should look to bring back more children and young people with EHC plans. The government have produced updated guidance on supporting children and young people with SEND as schools and colleges prepare for wider opening.

For children with an EHC plan, local authorities should work with educational providers, families and the child or young person to carry out a risk assessment to judge whether the child or young person’s needs cannot be met safely at home.

Where the risk assessment determines a child or young person with an EHC plan will be as safe or safer at an educational setting, it may be more appropriate for them to attend the educational setting.

Many children and young people who have an EHC plan can remain safely at home. Where the risk assessment determines a child or young person with an EHC plan will be safer at home, it may be more appropriate for them to stay at home rather than send them to school.

Local authorities should continue to provide transport for children and young people with EHC plans who are continuing to attend their usual educational setting. If children and young people with EHC plans are accessing an educational setting that is not local or their usual setting, the Government expects the local authority to review transport arrangements and endeavour to make appropriate provision for children to reach their educational setting safely.

Personal budgets and access to respite care

For children and young people with an EHC plan, the duties relating to personal budgets remain in place. A child’s parent, or a young person, has a right to request a personal budget when the local authority has completed an education health and care needs assessment and confirmed that it will prepare an EHC plan. They may also request a personal budget during a statutory review of an existing EHC plan.

Services for disabled children provided under section 17 of the Children Act 1989 typically include short breaks for parent carers. The local authority remains under a duty to provide these in appropriate circumstances. The Government recognises that this is likely to prove challenging during the coronavirus (COVID-19) outbreak, but is asking local authorities to ensure every effort is made to continue to provide this kind of important support for families who need it, wherever possible.

Where it is not possible for local authorities to arrange respite care for families as a result of the coronavirus outbreak, the Government encourages parents, carers and young people to discuss this with their local authority and agree what alternative arrangements can be made. This could include, for example, local authorities considering whether making a personal budget available on a temporary basis may enable the family to secure alternative respite care arrangements.

Further support and advice for families of children and young people with learning disabilities and autistic children and young people.

The Council for Disabled Children has a page of advice and information including answers to frequently asked questions by families.

Contact offer case work, information and advice for families with disabled children.

Staying well

Infection control and good personal hygiene

One of the most important things that families can do during the pandemic is to ensure as much as possible that the person with learning disabilities or autistic person with whom they live is maintaining good personal hygiene and household cleanliness, to reduce the risk of catching or spreading the infection. Perhaps especially for autistic people, the changes of routine involved may cause some distress.

Do:

  • Wash your hands with soap and water often – do this for at least 20 seconds.
  • Use hand sanitiser gel if soap and water are not available.
  • Wash your hands as soon as you get home.
  • Cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze.
  • Put used tissues in the bin immediately and wash your hands afterwards.

Do not:

  • Touch your eyes, nose or mouth if your hands are not clean.

Supporting people with personal hygiene and cleanliness around the house

  • The autistic person or person with a learning disability in your family may want to do as much for themselves as possible. Everything they can do for themselves safely and effectively, they should do.
  • Some people, conversely, will not want to engage with personal hygiene routines. Explaining the risks, and stressing the importance of good hygiene may help, but will sometimes be challenging. See our section on Not sticking to the guidelines.
  • There may be tasks that you have usually done hands-on with your family member – such as tooth-brushing - where prompting may be possible.
  • People will need to wash their hands more often, and for longer, than they might do normally: for at least 20 seconds every two hours. The need for this has to be explained, and any skin care issues arising from it addressed.
  • Cleaning of the house should be done regularly and thoroughly, especially in shared areas.
  • Remain vigilant about things that others may have touched, such as shopping, or deliveries to the house. Wipe surfaces that are touched regularly with household disinfectant.

Having clean hands is the most effective way of preventing infection from spreading.

Health and Care Innovations (HCI) have created a helpful video to guide you on this process.

Here are some other sources of information on cleaning and infection control which may be helpful:

What to do if you or the person you care for has symptoms

Government provide guidance for anyone caring for friends and family members, including advice for anyone caring for friends and family members, including advice on what to do if you or the person that you care for has symptoms of COVID-19.

It is important to note that the guidance differs depending on whether you, the person you support, or anyone else in the household is in the clinically vulnerable group (who are at increased risk of severe illness from coronavirus) or the clinically extremely vulnerable (shielded) group (who are at greatest risk of severe illness from coronavirus). The advice relating to each group is summarised below.

If nobody in the family, including the family member who is an autistic person or has learning disabilities, is ill or thought to have symptoms, then support can continue in the usual way.

If someone in the household does have symptoms or confirmed coronavirus then government advice on what to do depends on whether it is the person with learning disabilities or autistic person who has symptoms, or you as carer or another member of the household.

  • If the person you care for has symptoms... Open

    ... and you are not in the clinically vulnerable or clinically extremely vulnerable groups.

    If someone in your household has symptoms you should follow the Stay at home guidance which states that the first person in the household to have symptoms of coronavirus, must stay at home for seven days, or until their symptoms have gone, but all other household members who remain well must stay at home and not leave the house for 14 days.

    However, the guidance for carers acknowledges that following the Stay at Home guidance may not be easy to achieve where you provide close contact care, such as washing and bathing.

    If you and other family members do not fall into the clinically ‘vulnerable group’ or the clinically ‘extremely vulnerable group’ you can continue to provide care. You should take additional precautions where possible.

    • The person should self-isolate as best they can within the family home for seven days – staying in their own room, and using a separate bathroom if that is possible.
    • Their use of shared spaces – such as sitting rooms – should be minimised. Sometimes this just will not be possible, which adds to the challenge.
    • Extra attention to cleaning and personal hygiene may lessen the risks.
    • Avoid sharing towels.
    • Try to keep laundry separate.
    • Avoid shaking bedding.

    Government guidance does not recommend using facemasks in the home to prevent infection, unless advised to by a healthcare professional.

    … and you are in the clinically vulnerable group.

    You should follow the Stay at home guidance.

    You should also review the Guidance on social distancing and protecting older people and vulnerable adults. If you are within the group of people who are considered at increased risk of severe illness from coronavirus, you should be particularly stringent in following social distancing measures set out in that guidance.

    However, it is recognised that this may not be easy to achieve where you provide close contact care for a family member, such as washing and bathing.

    You should take what steps you can to physically distance yourself from the person you care for, including following the suggestions above.

    If possible, you could ask friends and family to support you in providing care.

    … and you are in the clinically extremely vulnerable group.

    If you are in the clinically extremely vulnerable group you should strictly avoid contact with someone who is displaying symptoms of coronavirus (COVID-19).

    Where possible, ask friends and family who can support you in providing care for their help. You should distance yourself from the person you care for as much as possible.

    If you cannot organise alternative care you can contact your local authority or health care provider. If you do not know how to do this you can contact NHS 111. It may also be helpful to contact your local carers support organisation. You can find out about local carer organisations at Carers UK.

  • If you (or someone else in your household) other than the person with learning disabilities or autistic person has symptoms Open

    If someone in your household has symptoms you should follow the Stay at home guidance which states that the first person in the household to have symptoms of coronavirus, must stay at home for seven days, or until their symptoms have gone, but all other household members who remain well must stay at home and not leave the house for 14 days.

    However, the guidance for carers acknowledges that following the Stay at Home guidance may not be easy to achieve where you provide close contact care, such as washing and bathing.

    If you care for a person in a clinically ‘vulnerable group’, you should self-isolate as best as possible within the home, and make alternative arrangements for their care with family members and friends. If you cannot organise alternative care you can contact your local authority or NHS trust.

    If you care for a person in a clinically ‘extremely vulnerable group’, you should strictly avoid contact with the person you care for and, where possible, ask friends and family who can support you for help in providing care. You should distance yourself from the person you care for as much as possible and follow the guidance for shielding people in clinically extremely vulnerable groups.

    If you cannot organise alternative care you can contact your local authority or health care provider. If you do not know how to do this, you can contact NHS 111. It may also be helpful to contact your local carers support organisation. You can find out about local carer organisations at Carers UK.

  • If a care worker or personal assistant who would normally visit the home has symptoms (a new continuous cough or fever or loss/change in your sense of smell or taste) Open

    They should stay away and self-isolate in their own home. They are eligible for coronavirus testing, and if they test negative they can return to providing support.

Personal budgets and personal assistants

If the person with learning disabilities or autistic person in your family uses a personal budget to employ a personal assistant (PA) you should review the support arrangements that are in place for when the PA is unable to work due to sickness or annual leave. You should consider if these arrangements are robust enough should a personal assistant need to self-isolate because they are ill themselves, are in a vulnerable group or live in a household where someone has developed symptoms of COVID-19.

The next section provides general advice on contingency planning, and the government have provided further advice specific for people who employ their PA.

Should you find yourself in a position where your personal assistant is unable to support you due to self-isolation or contraction of COVID-19 and you have no alternative arrangements available to you, you should contact the adult social care team or CCG team that provides your direct payment for alternative care arrangements. These teams must have systems and processes in place to respond to you as quickly as possible, acknowledging the nature of your needs and circumstance, and should support you to make suitable alternative arrangements.

Personal assistants are eligible for personal protective equipment (PPE) should that be required. If the existing direct payment contains funding to purchase PPE for the PA, you should continue to use that funding to purchase PPE. If you, or your PA, cannot obtain PPE in this way, or your direct payment is not set up to fund PPE, you should ask for assistance from the local authority or CCG that provides your direct payment who should help you to get the PPE you require. The Government has provided further advice and guidance on PA’s employed via direct payments and PPE.

If your family member is using a direct payment to buy care and support via a service such as a home care agency, they or you should:

  • Make early contact with the agency. Discuss the situation and agree any actions that will be taken should the regular, paid carer be unavailable.
  • Ensure that they have your up-to-date details, any relevant care and support plans and relevant dates if you need to attend important appointments with support.
  • If the direct payment is used to purchase other types of support, it’s important that you speak to the provider and agree arrangements if you foresee any issues in delivering this service during this period.

DHSC have provided guidance and a FAQ for people receiving direct payments.

Contingency planning

Many people caring for someone at home will already have plans in place in case someone is unable to continue in their caring role. Usually this will rely on other known support such as other family members, or an agency who can provide cover.

If you are worried that you don’t have a plan in place, or your usual contingency plan cannot be implemented because of the current crisis, then you can make a start:

  • Talk to your family member – the more they understand what is happening, the more they will take action to keep themselves safe.
  • Write down any key contacts (other family, neighbours, friends or professionals) who can be called upon for assistance.
  • Make sure that information about the support your family member needs is available, particularly if they would not be able to communicate this for themselves – for example, any information about specific needs, medication or routines.
  • Make a note of where you usually get any specialist supplies (e.g. incontinence supplies).
  • If you can’t think of people who could help, call your local authority adult social care and ask them to advise.

Together Matters has written information to help family carers plan with others, including professional care staff, to get the support they need during the current crisis.

Not sticking to the guidelines

It may be that your family member is reluctant to stick to, or does not understand, the rules around social distancing, self-isolation, or the need to wash hands once they are back from a trip out. This can be complex because it causes risks of infection for themselves and for other people. It will not be possible for every person to address this completely, but it may help to:

  • explain, repeatedly if necessary, the reasons behind the new ways of living, using some of the resources listed in this guide
  • use whatever communication techniques work best in normal circumstances with your family member
  • use positive reinforcement wherever possible to encourage your family member to stick to the rules
  • mitigate any risks, such as going out at quiet times if the person cannot maintain social distancing, or cleaning surfaces if the person does not wash their hands after a trip out
  • contact your local Community Team for Learning Disabilities or specialist autism team for advice.

Taking care of yourself

This is likely to be a difficult time for you as a family carer as well as for the person that you support. You may experience increased stress due to fear, uncertainty and the reduced formal support available, which could result in increased physical and emotional strain. This is understandable, and it is important that you do what you can to take care of yourself as well as the person that you support.

There is useful advice in COVID-19: Guidance for the public on mental health and wellbeing.

Government advice for unpaid carers has a section on looking after your own health while supporting others.

Carers UK has some advice for carers on protecting your mental wellbeing.

The Royal College of Occupational Therapists has useful guidance on staying well when social distancing.

If you start feeling that you are unable to cope, seek support and advice from your local authority.

Healthcare

Identifying health concerns

You will know your family member very well. It is important that you use your knowledge of the individual, how they normally are when well, and how they spend their day, to understand if there is any change. This is especially important if the person is unable to express or communicate how they are feeling. Changes may be due to the change in routine, ill health or an impact on their mental wellbeing.

It is important to monitor your family member for any signs of coronavirus – a new continuous cough or fever (equal to or above 37.8°C) or loss/change in your sense of smell or taste . If you think that the autistic person or the person with learning disabilities in your family may have significant coronavirus symptoms, then contact NHS 111, online in the first instance, or by phone, for clinical advice. Also contact 111 if symptoms persist for more than seven days. Be sure to explain if the person may be more at risk because of any long-term conditions. But if an autistic person or a person with learning disabilities has only mild, short-lived, symptoms, then there is no need to contact 111.

It is also important to monitor people’s general health and any underlying conditions that they may have; other health risks have not gone away. The local community learning disability team will still be operating, and will be available for advice or again, you can contact your GP or 111. You should not be afraid to seek medical care or support for conditions not related to coronavirus, for your family member or yourself.

Autistic people and people with a learning disability have equal rights to access healthcare, but we know that they sometimes experience barriers to getting the healthcare they need. During the coronavirus pandemic it is still the responsibility of the NHS to make reasonable adjustments where needed to allow equal access. Find out more about reasonable adjustments.

All GPs and other health services have received a letter explaining the importance of equal access to healthcare. In particular it clarifies use of the Clinical Frailty Scale (CFS) and the use of do not attempt cardiopulmonary resuscitation (DNACPR) with younger patients with a stable long-term physical need, learning disability or autism. A person should not have a DNACPR put in place without consultation or just on the basis of having a learning disability or significant levels of social care and support. The NHS provides some further information about available advocacy support and VoiceAbility have some useful information about advocacy during coronavirus.

NHS England have produced two documents for people with learning disabilities and autistic people about accessing NHS services during coronavirus – one in easy read, and one in plain English.

Shielding and social distancing

There some clinical conditions which put people at even higher risk of severe illness from COVID-19. Anyone who falls under this extremely vulnerable category should follow the shielding guidance to protect these individuals. A full list of relevant underlying conditions is provided there.

Anyone who falls into this category should have received a letter instructing them to ‘shield’ themselves by minimising all contact with other people for 12 weeks. If the person in your family has received one of these letters you can find some advice on what you should do to continue to provide care and support. If you think your family member has a condition that is on the shielding list, but has not had a letter about shielding, then contact your GP.

The government have updated their guidance to state that people who are shielding remain vulnerable and should continue to take precautions, but may now choose to leave their home.

From 1 August the Government will be advising that shielding will be paused. From that date, the government is advising people who are in the shielding category to adopt strict social distancing rather than full shielding measures. See government guidance for further details.

Some individuals who are not in the clinically extremely vulnerable group are nonetheless at an increased risk of severe illness from coronavirus:

  • anyone aged 70 years or older (regardless of medical conditions)
  • anyone aged under 70 years with an underlying health condition – for most this will align with eligibility for the flu jab on medical grounds.

If the person in your family is additionally vulnerable, you should support them to be stringent in following the social distancing guidance, or if the person is clinically extremely vulnerable, you must support them to follow guidance for this group.

People in the shielding group can register for support by calling the Government's helpline on 0800 028 8327 or visiting Get coronavirus support as a clinically extremely vulnerable person to register for the support that you need.

Going into hospital

In case the person being cared for does need to go into hospital it is worth making sure that their hospital passport is up to date. If you do not already have a hospital passport there is an emergency COVID-19 passport, and a presentation about how to fill it in. Learning Disability England has produced an easy read guide to help support people who may need to go into hospital, where you can find further advice and resources.

If the person that you support needs to go into hospital because of coronavirus, Mencap has produced some easy read guides to going into hospital which may help explain what will happen.

Because the of COVID-19 outbreak many visits to hospital have been suspended. However, if someone with a learning disability or an autistic person does need to go into hospital (for any reason),a family member or carer can visit or accompany them, where not being present would cause the person to be distressed.

Advance decisions to refuse treatment and advance planning

There is a great deal of concern at the moment that some people - especially people with complex health issues - are being pressured into agreeing to DNACPRs, or that GPs and health professionals may be issuing blanket decision across groups of people. This is never acceptable, and family carers have an important role to play in making sure this is not happening to their family member.

Advance planning and decision making are important tools to make sure people remain in control of their health choices and rights. An advance decision to refuse treatment (ADRT) can be made by anyone with the mental capacity to make their wishes clear, and the person’s wishes must be respected. This may include a decision by the individual to refuse certain types of treatment. This is just as much the case for people with a learning disability or an autistic person as anyone else.

It may be helpful to have a conversation about advance decisions with anyone who has a health condition that may shorten their life, or who is in the high-risk groups that have been identified in relation to COVID-19. This will aim to ensure that your family member remains in control and their wishes are respected.

The charity Compassion in Dying offer advice and a range of resources to help people through the process of making an advance decision to refuse treatment.

The Royal College of Physicians offers a guide, specific to COVID-19, on Understanding treatments and outcomes in hospital and critical care.

The National Institute for Health and Care Excellence provide a range of resources on Decision-making and mental capacity.

Easements of the Care Act 2014 and a framework for decision making

The current crisis has meant that there may be some local easements to the Care Act 2014. These changes temporarily amend some of the duties and powers that local authorities have in relation to providing care.

The intention is that these changes will allow local authorities to prioritise meeting the most urgent and acute needs in a time of great pressure on social care services. Any decisions they make will be done in line with the Ethical Framework for Adult Social Care

It is important to note that until the local authority has decided to enact the easements locally, and has informed the Department of Health and Social Care, then the usual Care Act requirements remain. You will be informed by the local authority should it choose to enact the easements.

These changes do not affect the Human Rights Act. While the Care Act may be amended locally, the Mental Capacity Act – as the legal framework which asserts and supports people’s rights to make their own decisions – has not changed. Duties in the MCA relating to Deprivation of Liberty Safeguards (DoLS) remain in place, as do duties imposed under the Equality Act 2010, although there is new government guidance to applying DoLS in the pandemic. Safeguarding duties are not affected by the easements.

The Coronavirus Act 2020 makes some changes to a local authority’s duty to do transition planning. Check with your social work or special educational needs team if this applies to you and your family.

Safeguarding

There are no changes to safeguarding laws or duties. Additional issues may arise for you due to heightened anxiety in the home and any related behaviours. As a family carer you may experience increased stress due to fear, uncertainty and the reduced formal support, which could result in increased physical and emotional strain. This is understandable, and you should do what you can to take care of yourself as well as the person that you support.

Thousands of new volunteers have been drafted in to help. If you have any concerns about volunteers or new people who are coming into contact with you or your family member during this time, you can talk to the local authority about your concerns. See SCIE’s Safeguarding adults during the COVID-19 crisis. Similarly, there has already during the pandemic been an increase in fraud and scamming of people with additional vulnerabilities, so keep an eye out for this, and support your family member not to be too trusting of strangers offering help, or emails and texts that purport to be official.

Death and bereavement

The current crisis means there is a lot of discussion of death in the media, and there is an increased chance that everyone, including autistic people and people with a learning disability, will experience the death of a family member or friend.

It may be tempting to try and shield people with a learning disability or autistic people from upsetting subjects such as death, but generally this is not helpful. Having open and honest discussions about death is often the best approach, but you will be in the best position to judge how to handle these conversations. It is normally advisable to avoid euphemisms like ‘gone to sleep’ or ‘gone to a better place’, which can cause confusion, especially with someone who may interpret such comments very literally.

Do not be afraid of showing your own emotions while supporting someone through a bereavement. People with learning disabilities can feel supported by seeing that you are upset too.

It may be useful to have conversations about death before people have personal experience of it. Media discussions of deaths due to coronavirus could be a way to start these conversations.

The resources below provide more detailed advice and resources for talking about death and bereavement with people with a learning disability and autistic people.