The coronavirus vaccine is currently being offered on a “roll-out” basis of nine priority groups, which mostly categorise people by their age. However, people who live or work in care homes and health care workers have also been offered the vaccine early because of their high risk, as well as people who are identified as “clinically extremely vulnerable.”
The vaccine programme is now focusing on priority group six, which includes paid and unpaid carers and all people with a learning disability, as well as people with other medical conditions. Vaccination for other groups, including people aged under 64 who do not have a condition which puts them in a high-risk group, will begin once the supply of vaccines becomes available.

Below, we have set out some of the main things people who are carers for a disabled person and people with a learning disability may need to consider when getting a coronavirus vaccine. This also includes further information on the process in Scotland, Northern Ireland and Wales, as things are a bit different across the UK.

You can read our general information about coronavirus vaccines here.

What does this mean for autistic people?

Autistic adults will eventually be covered in the vaccine roll-out by their age, but no announcement has been made about offering the vaccine earlier to autistic people who don’t have a learning disability. However, for autistic adults who live in care settings, the Government has said that when a care home or service includes someone who is clinically vulnerable, it would be sensible to offer the vaccination to all residents at the same time. 
There is also no information about people with complex needs who do not fit into one of the other categories, regardless of where they live. We have asked the Government to publish more information about this and will update this page when this is available.

Who is on the priority list for the vaccine?

This priority list was issued by the Joint Committee on Vaccination and Immunisation, which advises the Government. It sets out the groups of people who will get a vaccine in order of priority across the whole of the UK:

1. Residents in a care home for older adults and their carers.
2. Everyone 80 years of age and over, and frontline health and social care workers.
3. Everyone 75 years of age and over.
4. Everyone 70 years of age and over, and clinically extremely vulnerable individuals.
5. Everyone 65 years of age and over.
6. People aged 16-64 who have underlying health conditions which put them at higher risk of serious disease and mortality, including people with a learning disability. Group 6 also includes unpaid carers, including people who are in receipt of Carer’s Allowance or are the main carer of an elderly or disabled person. This does not include the person they care for, although that person may fall into one of the priority groups for a different reason.
7. Everyone 60 years of age and over.
8. Everyone 55 years of age and over.
9. Everyone 50 years of age and over.
10. Everyone aged 40 years of age and over.
11. Everyone aged 30 years of age and over.
12. Everyone aged 18 years of age and over. 

Which health conditions does priority group six include?

As well as unpaid adult carers, the clinical conditions that mean people will fall into priority group six for the vaccine include:

• a learning disability
• a blood cancer (such as leukaemia, lymphoma or myeloma)
• diabetes
• dementia
• a heart problem
• a chest complaint or breathing difficulties, including bronchitis, emphysema or severe asthma
• a kidney disease
• a liver disease
• lowered immunity due to disease or treatment (such as HIV infection, steroid medication, chemotherapy or radiotherapy)
• rheumatoid arthritis, lupus or psoriasis (people may require long term immunosuppressive treatments)
• having had an organ transplant
• having had a stroke or a transient ischaemic attack (TIA)
• a neurological or muscle wasting condition
• a problem with your spleen, such as sickle cell disease, or if you have had your spleen removed
• being seriously overweight (BMI of 40 and above)
• severe mental illness

How will the Government know I am a carer?

Priority group six includes unpaid adult carers, which means people who receive Carer’s Allowance or who are the main carer of an elderly or disabled person whose welfare may be at risk if the carer falls ill.

GPs will be contacting local councils for their records of who is an unpaid carer as well as using the surgery's own patient records. If you are an unpaid carer, you may want to contact both social services and your local GP to let them know that you are an unpaid or family carer if it is not already recorded. This is how the Government will know to contact you when it is your turn. 

If you receive Carer’s Allowance you do not need to wait to be contacted by your GP - you can use this NHS link to book your vaccine. However, in order to do this, you must first be registered with a GP.

Information about unpaid carers in Scotland:

As well as the above, in Scotland, the Government will also be contacting local Carer Centres for their records of who is a carer. You could contact your local Carer Centre, as well as your GP, to make sure they are aware you are a carer. To find your local Carer Centre you can search here.

On the15 March, the Scottish Government launched its online self-registration service for unpaid carers. This allows anyone between 16-64 who provides face-to-face care for a family member or friend to register for their vaccine. To register or find out more, click here.

Information about unpaid carers in Northern Ireland:

As well as the above, in Nothern Ireland, you can now book a vaccination online at one of the seven trust vaccination centres if you are the main carer of an elderly or disabled person. You can make an appointment via the online portal here.

Information about unpaid carers in Wales:

In Wales, the Welsh Government has provided additional information on the prioritisation of unpaid carers. Eligibility is not dependant on receipt of Carer’s Allowance, membership of a carers’ organisation or being known to social services. 

To qualify for a vaccination within group six, a carer has to satisfy at least one criteria in all of three categories:

The vulnerability of the person they care for:

• is 65 years old and over (group 5)
• is deemed extremely vulnerable (group 4)
• has a defined underlying health condition including mental illness (group 6)
• is a child under 16 with complex medical needs/severe neuro-disabilities.

The nature of care provided:

• to those 16 and over: includes, but is not restricted to, helping with eating, bathing, shaving, managing continence, dressing and walking. It may include intervening in challenging or risky behaviour. It may include providing significant levels of support and supervision at home or in the community and where social distancing is not possible.
• to those 16 and under with complex medical needs/ severe neuro-disabilities:  is beyond the care and support parents ordinarily provide for a child. It may include intensive personal care such as daily washing and continence care and /or managing behaviours that challenge.

The unpaid carer is the sole or primary carer

• the Welsh Government does however recognise there may be arrangements whereby two people evenly divide caring responsibilities. In such instances, both unpaid carers may be considered as the primary carers.

What do I need to do?

Local health boards, along with social services departments, have overall responsibility for identifying eligible carers in their area. Carers registered with their GP should be contacted automatically, and so don’t need to do anything.

The Welsh Government advise eligible unpaid carers not registered with their GP to contact their local health board for further information and to fill out an online booking form. Contact details are listed here.

As a carer, do I have to be in receipt of Carer’s Allowance to be eligible for the vaccine?

No. Both carers who are unpaid or in receipt of Carer’s Allowance are included in priority group six if you are the main carer of an elderly or disabled person. Therefore, if you are the main carer, or one of the main carers, of the person you support you do not have to be in receipt of Carer’s Allowance to be considered a priority for the vaccine. In Wales, eligibility is not identified by Carer’s Allowance.

How will the Government know if the person I care for or my loved one has a learning disability?

The Government has now stated all people with a learning disability have been added to priority group six, not just those who are considered to have a severe or profound learning disability. This is the same across the UK. GPs will be using their records to contact all people with a learning disability for the vaccination.  You may want to contact your GP to make sure that they know whether you, the person you care for or a loved one has a learning disability. This is how the Government will know to contact you when it is your turn.

I am a carer who is on the priority list for the vaccine, will my child/the adult I care for also be entitled to get the vaccine? 

Children aged under 16 years of age are not currently on the priority list for the vaccine as the virus is shown not to affect them. However, people aged 16 – 64 who have underlying health conditions which put them at higher risk of serious disease and mortality are also sixth in line for priority to have the vaccine. Therefore, if the person you care for has one of these health conditions, they are also a priority. 

This includes people with a learning disability, but not autistic people without a learning disability. If the person you care for is not considered clinically vulnerable they will not be considered a priority for the vaccine.

Are there any videos people with a learning disability and autistic people can watch to help prepare them for getting the vaccine?

NHS England recently published a film on vaccinations for people with a learning disability and/or autistic people. This applies generally to all vaccines, including the coronavirus vaccine. The video describes what a vaccine is, how vaccines are made, whether a vaccine can make you ill and how to decide whether to have a vaccine. The link will also take you to other videos about vaccinations, including the flu vaccine.
Connor, a young autistic man, has made a very helpful video about his own experience getting the coronavirus vaccine to help prepare other autistic people. You can watch this here. 

Advice for people with a learning disability or severe mental illness in Wales

The Welsh Government has issued new guidance which sets out how people with a disability or severe mental illness will receive the vaccine. If your GP has a record of you or the person you support’s learning disability or severe mental illness, then you should automatically be added to group six. However, health boards will also have discretion to ensure that no vulnerable person within the priority group is left without the vaccine. This means they need to work with charities and voluntary organisations, local authorities, community learning disability teams, community mental health teams, or families and carers services to ensure that everyone is covered.

So that there is a consistent approach to identifying the correct people, health boards will need to consider:

• a person’s clinical vulnerability - the presence of pre-existing / co-occurring health conditions and level of complexity of those health conditions
• ethnicity
• socio-economic factors
• the type of accommodation they live in: living in a communal setting, for example, in supported living or a residential care setting
• the extent to which they are able to practise protective behaviours such as social distancing, wearing a mask and hand hygiene, in a consistent way
• someone’s ability to adhere to treatment routines and tolerate intervention
• whether or not they are known to services such as the community mental health team, or the learning disability team

The Welsh Government has also set out the need to consider what reasonable adjustments may be required to ensure that everyone has equal access to the vaccination. For example, this might include changes to the environment in which the vaccination takes place.

What do I need to do?

If you or the person you care for is already known to your GP to be eligible, then arrangements for the vaccination should be made automatically. If you’re not sure, contact your GP to find out.

You can also speak to any other professionals you’re already in contact with, including those in your council’s learning disability team, or community mental health team, and ask them how to make sure you or the person you care for is included, if eligible. When you receive an invitation for vaccination, discuss what reasonable adjustments may be needed, referring to the Welsh Government guidance, if required.

What we’re doing

We are asking the Government for more information about when working age autistic adults or children who are not clinically vulnerable or have an underlying health condition will be offered a coronavirus vaccine.

We are telling the Government about your experiences of the coronavirus outbreak so it knows what life is like for autistic people and their families. If you want to share your experiences, and any worries or concerns you have, with us by emailing stories@nas.org.uk.