COVID-19 guide for social workers and occupational therapists supporting adults with learning disabilities and autistic adults

Updated: 10 September 2021

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 responding to the challenges posed, while at the same time protecting and promoting people’s rights wherever possible.

This public health crisis continues to have an impact on those with care and support needs, carers and staff. The care and help available may still be limited at times, because staff may be ill or self-isolating. Social workers and occupational therapists, just like other staff, and the people they support, may 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 could still be interrupted at times, and this may cause heightened anxiety.

Support from BASW and SCIE

The British Association of Social Workers (BASW), has 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 autistic people and people with learning disabilities in additional need of strong, trusting relationships with people who understand them and their situation.

As some social work tasks continue 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? Two further resources that may be helpful are Building rapport and establishing meaningful relationships using technology and Technology checklist for video calling an adult or carer.

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 guidance from the Government on face coverings, testing, isolation and mixing with other people 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 still some changes to ordinary life and that everyone has their part to play. This may include why support staff might be wearing masks, gloves and aprons, and why people may not be able to go out to the usual places without considering the risks involved. People may be able to develop their usual coping strategies with the help of those who support them.

General measures

Although most legal restrictions have been lifted, there is ongoing spread of COVID-19 and new variants of concern have been identified.

Detailed guidance explaining the latest advice is available.

Everyone should continue to:

  • Get tested if you develop any symptoms and consider asymptomatic testing to help manage your personal risk
  • Isolate if you have a positive test and if you are contacted by NHS Test and Trace and haven’t yet been fully vaccinated.

Everyone is advised to:

  • Wear a face covering in crowded areas, including public transport
  • Stay outdoors when mixing with others or let fresh air in if mixing indoors
  • Minimise the number of people you mix with and for how long
  • Consider continuing to work from home if possible
  • Wash your hands or use hand sanitiser regularly through the day

It is no longer compulsory in England to wear a face mask on public transport and in a wide range of indoor settings but it is both advised and likely that many places will ask you to continue to do so. However, there will still be 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.

The vaccination programme is now well underway and many people are fully vaccinated. However, even when a person has had both doses, it remains vital that they continue to follow the measures outlined in this guide.

As a result of progress with the vaccines, from 16 August people who have received both their vaccines at least two weeks ago and those aged under 18 years and six months are no longer required to self-isolate if they are a close contact of someone who tests positive. They will instead be given advice on testing and guidance on preventing spread of COVID-19.

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

Shielding ended on 1 April. Those in the clinically extremely vulnerable group, and people caring for them, should continue to follow the updated shielding guidance for the foreseeable future.

Maintaining relationships

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

Restrictions on the number of people who can meet indoors and outdoors have been lifted, as has the requirement to remain 2m from anyone you don’t live with. However, as the infection rate is currently high, everyone is advised to be cautious and to take the actions that are known to reduce the chance of spreading COVID-19:

  • Meet outside
  • If meeting inside, keep the space well ventilated
  • Minimise how many people are in close contact and for how long
  • Wash hands and clean surfaces regularly
  • Take the vaccine when offered it
  • Remember that some people are more vulnerable than others to being seriously ill with COVID-19
  • Get tested twice a week

Anyone living in an area where there is known to be spread of a new variant or where extra support is being provided due to very high numbers of infections should be particularly cautious.

Autistic people and people with learning disabilities have made 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 continue to 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.

Even as restrictions ease, remember that the people you support may continue to experience loneliness as a result of the changes in their life. They may also experience anxiety about the virus outbreak and about beginning to mix more freely again. Some useful resources to support them are:

Staying well

Infection control and client contact

In line with Government guidance it is important to take infection control seriously in the course of your work. Risk assessments should be in place for all involved in adult social care – both the workforce and those being supported – to ensure the risk of infection can be mitigated, particularly for those considered clinically extremely vulnerable. Guidance is available to help employers with this.

As most legal restrictions have now been lifted, you may be undertaking more visits but as numbers of new cases remain high, it is still essential to consider how best to prevent the spread of the virus. Some visits have remained necessary throughout – where there has been a need to prevent significant harm, or to fulfil a statutory duty, for example – but it may be sensible to continue to minimise visits where there is a viable alternative (using digital technology or the telephone) that works for all involved. Even if the person you are supporting is not considered clinically vulnerable, they may have a carer or family member who is, so it is important to check before visiting that they are comfortable having you in the house and understand the risks of doing so. 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 undertaking a visit, a risk assessment should be in place, and you should consider what steps are needed to mitigate against the risks of infection. This may include:

  • Using PPE
  • Maintaining distance while in the house and touching as few things as possible
  • Taking a lateral flow test before visiting.

There is good advice from BASW.

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
Email: supplydisruptionservice@nhsbsa.nhs.uk

If you have symptoms (a new continuous cough or fever or loss/change in your sense of smell or taste) you should go home, self-isolate and take a PCR test. Also be aware that the variant currently causing most infections (known as the Delta variant) has some different symptoms, with headache, sore throat, runny nose and fever most commonly reported.

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.

Testing

Everyone, including social workers and occupational therapists, can access regular asymptomatic testing. The route to getting tested differs between the four countries, but for many social care staff will be arranged via their employer. It is also possible to go to a test site or order lateral flow test kits to do at home. Further information is available for England, Wales, Scotland and Northern Ireland.

Contingency planning

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

Healthcare

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. It is also important to be aware that the variant causing most infections currently (known as the Delta variant) has some different symptoms – headache, sore throat, runny nose and fever are most commonly reported. 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.

Shielding

Shielding ended on 1 April. People who are considered to be clinically extremely vulnerable are advised to continue to follow current government guidance.

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.

Although age and underlying health conditions are the greatest risk factors, the evidence suggests that other groups are also more likely to become seriously ill. This includes men, people from Black, Asian and minority ethnic (BAME) backgrounds, those living in more deprived areas, those born outside the UK or Ireland, and those living in a care home.

If the person that you support meets any of these criteria, you should support them to consider what steps they wish to take to minimise the risk of infection. This could include continuing to distance from people they do not live with, and asking friends and family who are visiting to take a lateral flow test first and wear a face covering. The guidance offers some advice about this.

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. Everyone being discharged from hospital into a care home should be tested for COVID-19 prior to discharge.

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.

Easements of the Care Act 2014, the Mental Health Act 1983, and a framework for decision-making

In March 2020, emergency legislation was introduced to help social care to cope under a possible increase in demand and reduction in staffing. Through the act, there were implications for children and young adults including changes made to the obligations under the Care Act (2014) and Mental Health Act (1983). This included the removal of the duty of local authorities to carry out a detailed assessment of the needs of young adults, on turning 18 years of age, and their carers when transitioning to adult services.

Since the inclusion of these Care Act easement powers, only eight local authorities have had need to use them and not since 29 June 2020. These easements expired in July 2021 and are no longer in force. Amendments relating to the Mental Health Act were expired in England in December 2020.

These changes did not affect the Human Rights Act. Local authorities remained 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) remained in place, as did duties imposed under the Equality Act 2010. Safeguarding duties were not affected by the easements.

Decisions about care and support should continue to 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:

  • Respect
  • Reasonableness
  • Minimising harm
  • Inclusiveness
  • Accountability
  • Flexibility
  • Proportionality
  • Community

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.

Safeguarding

Safeguarding duties were 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 have been required as normal throughout the pandemic; the methods by which they are conducted, however, have sometimes been different. Although face to face meetings are now more likely, some may continue to be done remotely, and at times it may still be harder to arrange GP appointments, or to involve the police.

Without personal contact it may have been much more difficult to spot signs that might cause concern. For example, it might have been harder to pick up deterioration in mental health and wellbeing as a result of the pandemic, or to identify safeguarding concerns. These situations may now be becoming more evident.

See SCIE's Safeguarding adults during the COVID-19 crisis.

Death and bereavement

The pandemic means there has been a lot of discussion of death in the media, and there continues to be 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.

For more information