People with a learning disability are at risk when they do not receive correct information in a format that they understand. Learning Disability Wales, as part of the Learning Disability Consortium, has written to First Minister Mark Drakeford to express increasing concern that Welsh Government has yet to publish an accessible version of the letter sent to people advised to shield due to the coronavirus.
The letter and supporting evidence raise significant issues surrounding the shielding advice and information provided to people with a learning disability, who remain at a real risk of becoming ill and potentially losing their lives as a result. Learning Disability Wales has also raised its concerns as one of 32 charities on the impact to the wellbeing of people who are shielding, and the clarity of information provided about the recently updated shielding advice.
Learning Disability Wales is a member of the third sector consortium of national Learning Disability & Family Carer organisations alongside All Wales People First, All Wales Forum, Mencap Cymru, Cymorth Cymru and Down’s Syndrome Association.
As organisations working with people with a learning disability and their family carers, we are seeing and hearing increasing numbers of enquiries concerning confusions around shielding. ‘Shielding’ has been advised for around 130,000 people in Wales who are classed as extremely vulnerable to developing serious illness if they contract coronavirus because they have a specific health condition. The difference between ‘vulnerable’ and ‘shielding’ has also not been clear. We now know that shielding been extended to 16th August. The growing frustration we feel on behalf of the people we support has led the Consortium to formally request that the First Minister address the issues raised as a matter of urgency.
Easy read requested
Information in an easy read format is more than a useful resource – it is a fundamental requirement to enable people with learning disabilities to access and understand information that affects their lives and human rights. During a global pandemic, ensuring that information and advice is accessible is crucial to avert avoidable pain and suffering. There is currently no easy read version of the shielding letter and there are no plans to release one. When new letters with the recently updated shielding advice are sent, we call on Welsh Government to address the issues we have raised.
Letter hard to understand
The original letter is long and difficult to navigate. This can be incredibly stressful and confusing for a person with a learning disability, and especially for those who may not have support to understand what the letter contains and what they must do to protect themselves and others. Due to the pandemic, many of those who would usually receive support to organise bills, letters, and appointments do not have access to this support. People First groups have reported that some individuals advised to shield have not been doing so because they do not understand the contents of the letter. The letter is not personalised, and therefore lists a number of reasons why the individual may have received it. Many numbers and web links are included that do not apply to everyone, but this is not clear to the reader. Neither is the difference between ‘vulnerable’ and ‘shielding’ made clear in an accessible format. Clarity is needed as advice is different for these groups.
In addition, the instructions provided in the letter often require internet access, which people with a learning disability do not always have. This will present further challenges to many people.
Reasons for shielding not clear
In the letter the Consortium also raises the issue of who is receiving the shielding letters. There has been no clear logic. Through service providers we are aware of people who had been expected to receive a letter, based on known medical history, but have not. Others who do not believe that they fall into any of the categories noted have received the letter and are unsure what this means for them. The opportunity to discuss with a trusted medical professional would be highly beneficial, but availability has been variable.
For those who are made vulnerable by certain conditions, there are additional problems if they do not receive a letter. This is an issue in particular for those with parents who are key workers and run the risk of bringing the virus home if they continue to work as usual. Some employers have refused to implement any adjustments unless the parents can produce a shielding letter. This has meant some families have been plunged into financial hardship as the parents have taken unpaid leave in order to protect their child.
Shopping deliveries an issue
In fact, many people with learning disabilities who previously were in supported living have returned to live with members of their family. Due to living away from their registered address, this has resulted in some people having trouble accessing shopping delivery slots designated for vulnerable people. Official advice is to contact supermarkets directly, a daunting task for someone with a learning disability, and an approach that has not always been met with understanding. The same goes for contacting the local authority and receiving a food parcel, as dietary requirements related to medical needs are not taken into consideration.
Many people in Wales with learning disabilities live in supported housing, sharing their home with people who are not a part of their family. Guidance must be included in the letter on rights and responsibilities if another person in the shared home is shielding.
Longer term issues
The Consortium asks what plans are being made to support the longer-term well-being of people who may require to be shielded for a significant amount of time, with certain restrictions likely to remain in place until a vaccine is available. This support must be accessible for people with a learning disability. The Consortium calls on the First Minister to confirm that those shielding will be a priority group in terms of access to a vaccine, when it becomes available. We also call for assurances that the vulnerabilities of those who are at a higher risk, but not considered to be in the shielding group, will be taken into account when prioritising access to a vaccine.
Dates on shielding confusing
There has been much confusion about dates, as people have received the letter at different times and question whether the 12 weeks’ advised shielding noted in the letter should begin from the date of receipt or from the beginning of the official lockdown. On 4th June Welsh Government announced that shielding should continue until the 16th August, but neither this date nor the previous date of 15th June was included in the letters, thereby leading to further confusion.
On 1st June Welsh Government updated the guidance on shielding. In a letter dated 2nd June Learning Disability Wales was one of 32 signatories to write to the First Minister raising concerns related to the new guidance. Restrictions have been eased to allow the shielding group to exercise and meet with others of another household outdoors. With the advice stating that a measure of ‘reasonableness’ must be applied when adhering to the new guidelines, a confusing burden is placed on those people in at risk groups who will now need to work out how to balance these new guidelines while still being asked to continue to stay away from work, shopping and collecting medicine. As this information has not been provided in an accessible format, this presents additional barriers to understanding for people with learning disabilities. We would welcome further information on the rationale for departing from the existing guidance.
The inequality of access to information could mean significant harm or loss of life to one of the more vulnerable groups of society in Wales. We urgently call on the First Minister and Welsh Government to address the concerns raised relating to shielding, communicating more clearly and in an accessible way, in order to reduce the risk to people with learning disabilities from Covid-19.
Although there is no easy read letter for the individual themselves, there is overall guidance here.