Last reviewed 2 July 2020

The global coronavirus (Covid-19) pandemic has been an immeasurable source of anxiety, fear, uncertainty and stress, all of which are normal reactions to this evolving situation. In this article, Deborah Bellamy explains how these reactions are likely to have intensified for service users in adult residential care settings with learning disabilities or autism, and the particular challenges of caring for this group.

As autism spectrum disorder (ASD) is often accompanied by anxiety and, as the pandemic has disrupted normal routines, this can cause further distress, with service users having difficulty comprehending the complex situation and expressing themselves. While such service users share similar needs with other vulnerable groups, there are distinctive factors that need to be taken into consideration, for example service users with a learning disability are at increased risk of respiratory illnesses. In March 2020, NHS England highlighted higher rates of morbidity and mortality than in the general population with greater prevalence of diabetes, obesity or being underweight which renders this group more vulnerable to Covid-19.

Care Quality Commission (CQC) figures also show the impact on this group is at a younger age range than in the wider population. Since the initial data release, the Department of Health and Social Care (DHSC) announced Covid-19 testing will be rolled out across residential adult social care settings, including adults of working age with a learning disability.

Differences in Covid-19 symptoms

Those with a learning disability or autism may present with more subtle symptoms or early indicators of Covid-19. Staff should be vigilant for deterioration of a service user, alteration in usual temperament and behavioural changes. Other signs such as an unsteady gait, becoming increasingly tired, sleeping more, increased restlessness and agitation have also been noted. Having records of how the individual usually presents when well may be useful, particularly if other staff unfamiliar with the service user become involved in care delivery.

In many cases, if the service user contracts coronavirus, they may be able to be safely cared for in their existing setting. This will be dependent on facilities and the ability of sufficiently trained and competent staff being available to assess, monitor and support physical care requirements.

However, there may be situations where transfer to hospital is necessary with care and support delivered in the individual’s best interests. During the coronavirus pandemic, it is still the responsibility of the NHS to make reasonable adjustments, where needed, to allow equal access.

Dealing with challenges

Whilst a great deal has been changed by the pandemic, the preferences, personality and interests of the service user are unlikely to have altered. Inclusion in discussions and decisions will result in greater probability of individuals understanding what is happening. For others who have a more profound learning disability or autism, possibly with little or no language or considerable physical or sensory disabilities, Covid-19 may raise other issues.

For those who struggle in social situations and do not like being touched, isolation may be preferable. On the other hand, service users who are outgoing and spontaneously tactile will naturally become distressed by the need for social distancing. For those who participate actively in leisure and social activities, the frustrations of isolation from friends and family may have had a profound longer-term impact.

It may be beneficial to consider areas of life that can remain normal and emphasise these with practical elements such as establishing daily routines, including exercise, virtual social contact, mealtimes and good sleep routines. Explanations as to why things have changed should be given in simple terms, together with reassurances that the restrictions are not forever. Introduce gradual changes that allow for the best and safest care provision in order for health and social care to transition towards a new normal.

Maintaining relationships

Service users with autism or learning disabilities may opt to use various video call facilities to maintain relationships, supported where necessary.

For those not living together but who had regular face-to-face contact with their partner previously, this will be a difficult time and they may need additional support with their emotional life with privacy to use technology to continue to have an intimate relationship.

Learning Disability England have resources for staying in touch and socialising online which can be accessed at: www.learningdisabilityengland.org.uk.

Symptomatic service users

Any service user displaying symptoms of Covid-19, such as a new persistent cough or temperature, or loss or change in sense of smell or taste (anosmia), must be treated as a possible Covid-19 case and isolated from others.

Contingency plans should be devised, if this is liable to be particularly challenging or if caring for service users in isolation is likely to require substantially more staff input. Additional funding should be available to support such costs under the Adult Social Care Infection Control Fund.

Use of personal protective equipment (PPE)

Employers must carry out a full risk assessment and provide specialist training and appropriate personal protective equipment (PPE). If it is not possible to support a service user with hands-on personal care or assistance with eating from a distance, then staff should follow Public Health England (PHE) guidance around providing care and appropriate use of PPE.

Some service users with limited language capacity or impaired hearing rely on reading facial expressions for lip reading or communication so face masks make this complex and a cause of distress. This may result in behavioural changes that may cause harm to the individual or others. Difficulties recognising familiar faces behind masks and visors can also lead to increased anxiety. However, it is not acceptable to modify PPE as this could reduce efficacy protecting staff and service users alike. Greater needs for hygiene standards to be maintained and good role modelling by staff in effective regular handwashing is key.

Care England have provided some suggestions to help make PPE seem less frightening, which can be accessed at: www.careengland.org.uk. See also Supporting people with autism.

Risk assessment

Frequent risk assessments will have been undertaken on an ongoing basis to respond to the evolving pandemic. For a small number of service users, this involves a complex balance of risks as change may lead to strong reactions with possibly significant consequences.

Despite explanation, education and desensitisation, some service users may repeatedly attempt to remove PPE or react with extreme distress or anxiety. The severity, intensity and/or frequency of the behaviours of concern may place the supporting staff at risk.

A comprehensive risk assessment for each individual should identify specific issues which should be clearly documented in a risk management plan agreed by the service user and/or their advocate, the multidisciplinary team and the organisation and team providing support. Any decision not to use PPE should be kept under constant review. Where possible, alternative solutions and strategies which may enable the introduction of the appropriate level of PPE should be sought.

Management should also consider the risks to the staff involved. The views and preferences of staff and any conditions which may make them more vulnerable to Covid-19 must be considered. It may be suitable to relocate staff, particularly those with a vulnerable member in their household or underlying health conditions in some circumstances.

Training needs

Providers should ensure staff have access to appropriate training courses so they feel confident and competent to incorporate physical healthcare interventions as necessary and appropriate, and be able to access training in physical health assessment and monitoring a physically deteriorating service user.