COVID-19 guide for social workers and occupational therapists supporting adults with learning disabilities and autistic adults
Updated: July 2020
This is a guide to help social workers and occupational therapists supporting adults with learning disabilities and autistic adults through the COVID-19 crisis.
People with learning disabilities and autistic people have the same rights as the rest of the population to live fulfilled lives as active members of families and communities. Practice in social work and occupational therapy is underpinned by human rights and the Mental Capacity Act (MCA), the legal framework which asserts and supports people’s rights to make their own decisions.
During the COVID-19 pandemic, however, everyone’s lives are being limited, and everyone’s human rights are being affected. This guidance aims to help occupational therapists and social workers keep people with learning disabilities and autistic adults safe, and to help them play their part in getting through this national emergency, while at the same time protecting and promoting people’s rights wherever possible.
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. Social workers and occupational therapists, just like other staff, and the people they support, will be anxious about their own health and family. Occupational therapists, social workers and care staff may also be under increased work pressure due to other staff being off sick or self-isolating. For those with support needs and their carers, routines will have been interrupted, and this may cause heightened anxiety.
Because of your role, you are judged by the government to be an essential worker. That may mean, for example, that your children can continue to go to school, and that you can use priority shopping times in some supermarkets. You will need to take some form of ID with you. If you are a frontline worker delivering social care you are eligible for coronavirus testing.
Support from BASW and SCIE
The British Association of Social Workers (BASW), has in the last few months produced a number of relevant resources for supporting people with learning disabilities and autistic people during the coronavirus pandemic.
BASW in 2019 launched capabilities statements for social workers supporting people with learning disabilities, and for social workers supporting autistic adults
While the two statements are distinct, there are common themes to the knowledge, skills, behaviours and attitudes they set out for social workers. Among these are a focus on rights-based practice; on person-centred, strengths-based working; on knowing the law; and on the fundamental importance of strong relationships being at the heart of good social work.
All of these skills and qualities are important right now, with the laws with which social workers operate in flux, and autistic people and people with learning disabilities in additional need of strong, trusting relationships with people who understand them and their situation.
As many social work tasks now need to be done remotely, some work that BASW and SCIE did together in 2020 on digital capabilities for social workers will be useful. It sets out the skills, knowledge and ethical frameworks that social workers need to understand when working with digital technologies. Working remotely brings some challenges, and you will have to consider the needs of people who are not digitally connected: are there neighbours who may be able to help, for example?
While the above resources are targeted specifically at social workers, it is likely that occupational therapists will find much of the material useful. In addition, the Royal College of Occupational Therapists has useful COVID-19 guidance.
Helping the person to understand the changes
Social workers and occupational therapists are important providers of guidance to people with learning disabilities, autistic people, and their families. People may turn to you for advice on how to keep safe, and on how to cope with the challenges of the current crisis more generally. GOV.UK is the main website for advice on COVID-19 from Public Health England, and includes accessible materials. It is important that you are familiar with the main instructions from the Government on infection control and social distancing, both so that you can carry out your work safely, and give clear messages to those you support about what they need to do.
Reassurance is also important, so you may want to explain or reiterate why there are so many changes to ordinary life, that the changes are temporary, and that everyone has their part to play. This may include why people are not visiting, why support staff might be wearing masks, gloves and aprons, and why people cannot go out to the usual places. People may be able to develop their usual coping strategies with the help of those who support them.
Further reading Open
- Easy read information about the rules to stay at home (Public Health England)
- Easy read advice on how to stay at home (Public Health England)
- National Autistic Society
- Explaining Coronavirus for People with Learning Disabilities and other videos (Surrey and Borders Partnership Trust)
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 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. Find the system which works best for each person you support.
But despite everyone’s best efforts, the people you support may experience loneliness as a result of the reduction in face-to-face opportunities to socialise, connect with family, neighbours and friends, and take part in physical activity and everyday cultural and faith experiences. They may also experience anxiety about the virus outbreak. Some useful resources to support them are:
- How we can all help (Autism.org)
- Looking after your feelings and your body (Public Health England)
- Coronavirus anxiety tips (NHS)
- Coronavirus: Information from other organisations (Mencap)
- Explaining Coronavirus and exercises to help with anxiety for People with Learning Disabilities (Surrey and Borders Partnership Trust)
Infection control and client contact
In line with Government guidance it is important to take infection control and social distancing seriously in the course of your work. Actual physical or personal contact should be avoided to prevent the spread of the virus, and this must be the approach taken unless there are exceptional circumstances. In many cases you could use the telephone or digital messaging to communicate with people. In situations where you might previously have had a face-to-face meeting or visit, it may be better to use video-conferencing facilities if the technology is available and acceptable. People may be feeling anxious or frightened, and being able to see you may provide added reassurance.
If you have carefully considered all options and contact is essential, then you must consider the safety of yourself and those with whom you come into contact. There is good advice from BASW. You should maintain the recommended 2 metre distance at all times, and should touch as few things as possible when visiting. Be aware that even if you are supporting a person who is not seen as high risk, they may have a carer or other family member that is in a high-risk group. An actual visit to someone at this time would require a very strong justification, and you should seek the agreement of your manager before visiting. Of course, you will also need the consent of the person you are going to see, and will need to be assured that they understand the risks of you coming. When making these decisions it must be noted that anyone involved - service user, professional or carer may be ‘asymptomatic’ – so the risk of spreading the virus cannot be eliminated.
If you are meeting or visiting a service user or carer your employer must carry out a full risk assessment and provide you with training and any personal protective equipment (PPE) (gowns/aprons, masks, gloves, etc) that you may require. Current government guidance is that, if someone you support has COVID-19 symptoms, then plastic aprons, fluid-resistant surgical masks (FRSMs) and gloves should be used. Eye coverings will be subject to a risk assessment, depending on the individual case.
If you experience problems in accessing PPE there is now a dedicated line for you:
Tel: 0800 915 9964 / 0191 283 6543
If you have symptoms (a new continuous cough or fever or loss/change in your sense of smell or taste) you should go home and self-isolate.
If someone for whom you are the social worker or occupational therapist has symptoms, then you should not visit except in exceptional circumstances following a risk assessment by your employer.
As essential workers, social workers and occupational therapists are eligible for coronavirus testing. The route to getting tested differs between the four countries, but for many social care staff will be arranged via their employer, though self-referral may also be possible. Further information is available for England, Wales, Scotland and Northern Ireland.
Further reading Open
- COVID-19: infection prevention and control (IPC) (Public Health England)
Guidance on home care provision
- COVID-19: guidance on home care provision (Public Health England)
Guidance on PPE
- COVID-19 personal protective equipment (Public Health England)
- Recommended PPE for primary, outpatient, community and social care by setting, NHS and independent sector (Public Health England)
Many people caring for someone, either as a family carer, paid care worker or personal assistant, 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 family members or an agency who can provide cover, and it is the responsibility of the care agency, in the first instance, to provide contingency support.
Only if they are unable to should statutory services become involved in emergency contingency planning, but at that point you may be asked to support someone who has not previously made a plan.
- Make sure the person being supported is part of the discussion – they need to be involved as much as possible so they know what to expect.
- Think about what will need to be in place if the person providing support becomes ill.
- Write down any key contacts (family, neighbours, friends or professionals) who can be called upon for assistance.
- Make sure that information about the support the person needs is available, particularly if they would not be able to communicate this for themselves.
- Make a note of where the person usually gets any specialist supplies (e.g. incontinence supplies).
Local authorities and the NHS have recruited thousands of volunteers to offer help to those at home, for example with prescription or shopping deliveries. See COVID-19 Mutual Aid UK for another possible avenue of support.
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.
Further reading Open
Person-centred future planning – Person-centred future planning A quick guide for practitioners supporting people growing older with learning disabilities
Identifying health concerns
It is important to monitor people with learning disabilities for any signs of coronavirus – a new cough, sweating/ temperature, facial expression, and signs of pain or discomfort. It is likely that care staff or family members will be the first to spot these. It is also important that people monitor the general health and underlying conditions that people with learning disabilities may have; other health risks have not gone away. If you think an underlying health condition is worsening and you cannot contact the person’s usual GP or medical professional, you can call NHS 111 or contact 111 online for advice.
The criteria for identifying possible coronavirus cases are 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 person that you support may have significant coronavirus symptoms then they (or someone on their behalf) should 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. It should be explained that the person has a learning disability, and so may be more at risk. 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.
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 support. The NHS provides some further information about available advocacy support.
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.
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. The Government has provided a full list of relevant underlying conditions.
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 that you support has received one of these letters there is advice on what you should do to continue to provide care and support. If you are supporting a person who has a condition which suggest they ought to be on the shielding list, but has not received a letter, then they, their family, or you can contact their GP for advice.
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 are 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 a free flu jab on medical grounds.
If the person that you support meets either of those criteria, you should support them to be stringent in following social distancing guidance.
Individuals can call the government's helpline on 0800 028 8327 or visit Get coronavirus support as a clinically extremely vulnerable person to register for support.
Going into hospital
In case the person with learning disabilities does need to go into hospital it is worth making sure that their hospital passport is up to date. If they do not already have a hospital passport there is an emergency COVID-19 passport, and a presentation about how to fill it in. Georgia Frith has produced an easy read guide to help support people who may need to go into hospital, hosted by Learning Disability England who also have further advice and resources.
If the person that you support needs to go into hospital because of coronavirus, Mencap have produced some easy read guides to going into hospital which may help explain what will happen.
In order to ensure the NHS can maximise capacity for COVID-19 patients there have been changes to practice in hospital discharge. This may mean people are discharged from hospital with fewer and less robust preparations. It is important that community support services work closely with NHS partners to minimise risk relating to hospital discharge. As of 15 April 2020, everyone being discharged from hospital into a care home should be offered a coronavirus test, and the aim is to roll this out to all people leaving hospital with a social care package.
Further reading Open
- Alert cards for autistic adults and adults with health needs (Jane Green, InfiniteAutism)
- Guidance on social distancing for everyone in the UK (Public Health England)
- Someone to speak up for you (advocate) (NHS)
- Hospital passports (Mencap)
- Resources that can help (Learning Disability England)
- Easy read guides (Mencap)
- Coronavirus (COVID-19); Looking after your feelings and your body (Public Health England)
- Coronavirus (COVID-19): Guidance on protecting people most likely to get very poorly from coronavirus (shielding) (Public Health England)
- Guidance on shielding and protecting people (Public Health England)
Advance decisions to refuse treatment and advance planning
Advance planning and decision making is an important tool to make sure people remain in control of their health choices and rights. An advance decision to refuse medical intervention or treatment can be made, under the Mental Capacity Act, by anyone with the mental capacity to make their wishes clear, and the person’s wishes must be respected. Advance decisions can include, but are not limited to, refusing resuscitation – this is known as ‘do not resuscitate’ (DNR) or ‘do not attempt resuscitation’ (DNAR). If someone is making an advanced decision in light of COVID-19, they may want to include refusal of mechanical ventilation.
It is good practice to have a conversation about advance decisions with anyone who has a health condition that may shorten their life or is in the high-risk groups that have been identified in relation to COVID-19. This will aim to ensure that the person understands their options, remains in control and their wishes are respected.
Further reading Open
- The charity Compassion in Dying offers advice and a range of resources to help people through the process of making an advance decision to refuse treatment
- Understanding treatments and outcomes in hospital and critical care The Royal College of Physicians
- A quick guide for registered managers of care homes and home care services (NICE)
- Implementation support: Decision-making and mental capacity (NICE)
Easements of the Care Act 2014, the Mental Health Act 1983, and a framework for decision making
The current crisis has meant that there have been some 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. Local authorities will still be expected to take all reasonable steps to continue to meet care and support needs of people eligible for support, and the support needs of carers.
A local authority should only take a decision to begin exercising the Care Act easements when the workforce is significantly depleted, or demand on social care increased, to an extent that it is no longer reasonably practicable for it to comply with its Care Act duties. The decision to operate the easements should be taken locally. It should be agreed by the Director of Adult Social Services in conjunction with or on the recommendation of the Principal Social Worker. The Department of Health and Social Care must be informed if easements are used.
Even if the easements are triggered, decisions around care should still be made in conjunction with individuals. Person-centred approaches should be maintained. Any decisions taken in the context of the crisis should be reviewed regularly and any changes – be they a reduction in support, or unusually restrictive measures – should cease once the period of risk to people has reduced or ended.
These changes do not affect the Human Rights Act. Local Authorities will remain under a duty to meet needs where failure to do so would breach an individual’s human rights under the European Convention on Human Rights. Duties in the Mental Capacity Act 2005 relating to Deprivation of Liberty Safeguards (DoLS) remain in place, as do duties imposed under the Equality Act 2010. Safeguarding duties are not affected by the easements.
Decisions about care and support should be made in line with the Ethical Framework for Adult Social Care which all local authorities are expected to observe. The ethical framework emphasises eight principles:
- Minimising harm
Alongside the ethical framework, local authorities should continue to respect the principles of personalisation and co-production which are set out in the Making it Real framework for personalised care and support.
The Coronavirus Act 2020 provides for a number of temporary modifications to the Mental Health Act 1983 as well, in response to severe pressure on mental health service capacity and performance, due to the coronavirus outbreak. These are temporary measures, which allow for certain requirements of the Act to be relaxed on a case-by-case basis, if circumstances mean that they cannot be met. The intention is that these flexibilities help services to continue to offer care and treatment to those who need it, during the emergency period. It is important to note that the emergency powers are intended to only be used when there is a strong justification for doing so.
The changes to the Care Act make assessments a power rather than a duty. Assessments should still take place where possible, but it may not be possible or necessary for them to be face to face. Taking into account any cognitive and communication needs, and mental capacity, other ways of carrying out assessments should be considered:
- use of a third party/allied professional
- self-assessments – many people, perhaps with help from family members, could complete their own assessment form
- telephone or, if possible, other technology such as video calls, if people are comfortable with this.
It is important to explain to people that assessments carried out during the COVID-19 crisis can be redone or reviewed when things return to normal if it is felt necessary and additional services may be provided.
Further reading Open
Safeguarding duties are not affected by easements to the Care Act. It is important that we all remain vigilant about safeguarding the people we support during this difficult time, and occupational therapists – and more particularly social workers – have a central role to play.
Safeguarding duties and responsibilities apply to adults who:
- have care and support needs
- are experiencing, or at risk of abuse or neglect
- are unable to protect themselves because of their care and support needs.
Learning disabled and autistic adults have the right to be fully involved in decisions about their own lives. This includes all decisions relating to this pandemic and the restrictions which come with them. Decisions should never be made without an individual’s involvement, or consideration of their best interests. The six key principles of safeguarding serve as a helpful reminder of good practice at this time:
- Empowerment: people being supported and encouraged to make their own decisions and give informed consent.
- Prevention: it is better to take action before harm occurs.
- Proportionality: the least intrusive response appropriate to the risk presented
- Protection: support and representation for those in greatest need.
- Partnership: local solutions through services working with their communities.
- Accountability and transparency in safeguarding practice.
Additional safeguarding issues may arise, due to heightened anxiety in the home and any related behaviours. Family carers may be extremely stressed themselves, due to fear of the virus, uncertainty and reduced formal support, resulting in increased physical and emotional strain. If you notice signs that someone is not coping – don’t ignore it. Talk to the people you support about your concerns, and discuss the issue with colleagues and managers as you normally would. Preventative support around safeguarding is as important now as it has ever been.
If abuse or harm is suspected, the section 42 enquiries are required as normal; the methods by which they are conducted, however, will likely be different. Meetings will obviously have to be done remotely, and it may be hard to arrange GP appointments, or to involve the police, when so much attention is focused on coping with the pandemic.
Without personal contact it may be much more difficult to spot signs that might cause concern. For example, it might be hard to pick up deterioration in mental health and wellbeing as a result of the current situation, or to identify safeguarding concerns. There are indications of significant increases in domestic violence since the outbreak of the virus. Take time to ask how people are coping, and whether there are additional strains on family relationships. Another concern is the increase in fraud and scams, and you can also offer simple advice to people on this issue.
See SCIE's Safeguarding adults during the COVID-19 crisis.
Be aware also that thousands of new volunteers have been drafted in, either to the NHS, or much more informally, to help during the crisis, with people with additional needs being the intended recipients of much of this extra support. While this upturn in civic engagement is to be welcomed, it is helpful to l remain vigilant about any new people providing support. Any concerns should be raised in line with your safeguarding policy.
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 people with a learning disability and autistic people, will experience the death of a family member or friend.
If there is a bereavement, each autistic person or person with a learning disability will grieve in their own way, and it is important to take a person-centred approach to support them through this process. Having open and honest discussions about death is often the best approach. It is generally 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 and autistic people 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 autistic people and people with a learning disability.
Further reading Open
- When someone dies from coronavirus: a guide for families and carers (Books Beyond Worlds)
- Bereavement and learning disabilities (CWP)
- Dealing with a bereavement (Mencap)
- Loss, bereavement and death (BILD)
- Grief after bereavement or loss (NHS)
- Bereavement Advice Centre: Useful contacts
- Breaking Bad News
- Dimensions: Dying to matter (Dimensions)
- Supporting adult carers (NICE)
For more information
- COVID-19 frequently asked questions (RCOT)
- National Autistic Society
- Coronavirus (COVID-19) response and guidance notes (ADASS)
- Coronavirus (COVID-19) advice for social care (SCIE)
- NHS guidance for people working in healthcare (NHS)
- Protecting vulnerable people during the COVID-19 outbreak (LGA)
- COVID-19: guidance for residential care, supported living and home care (Public Health England)
- Social work and human rights: A practice guide (BASW)
- Supporting autistic adults and adults with learning disabilities during coronavirus outbreak (BASW)
- Enabling positive lives for autistic adults (NICE)
SCIE COVID-19 guides
SCIE has produced parallel guides for people providing support to people with learning disabilities and autistic adults: