22 January 2021
Here are the update slides from the last two Friday update sessions:
14 January 2021
Last week the Matthew Foundation hosted a webinar where Brian Chicoine (Medical Director, Advocate Medical Group Adult Down Syndrome Center and DSMIG-USA Board Member) and Andre Strydom (Professor of Intellectual Disabilities, King’s College London and President, Trisomy 21 Research Society) both spoke.
You can watch a recording of the webinar here.
12 January 2021
You can sign up for this Friday’s update session now.
If you would like to attend, register for your free place here.
The guidance around supported living settings and COVID-19 in England has been updated. This includes a section on visiting (reproduced below). You can read the guidance in full here.
Visitors and support bubbles (reproduced from https://www.gov.uk/government/publications/supported-living-services-during-coronavirus-covid-19/covid-19-guidance-for-supported-living)
We are currently in a situation where there is sustained community transmission across the UK and a care/support worker should assume that they are likely to encounter people with COVID-19 infection in routine work. Therefore, visits in person should be limited to protect the health and wellbeing of people being supported, their carers and the visitors. In supported living environments the accommodation is the person’s own home, however it may also be a staff workplace.
For some people, there are important reasons for having in-person visits, as not having these may be difficult to understand and lead to distress.
Supported living managers and care/support providers need to work with the people they support to identify where following the government requirements for visiting and support bubbles will cause distress, and consider options for in-person visits.
As of Wednesday 6 January 2021, a new national lockdown is in place across England. Visits with support bubbles are still allowed. Supported living managers, care/support workers, people being supported and their families and friends should follow national guidance on support bubbles and meeting others.
If the person is assessed as not having capacity in relation to this decision, the provider should work within the appropriate MCA framework to establish that a visit is in someone’s best interests.
If the person has capacity and wants a visit, the provider should:
It will also be important to consider the risks to visitors themselves and anyone they may later be in contact with, for example an older relative. The above should be achieved by building on relationships to advise people on infection prevention and control:
8 January 2021
You can download the slides from this morning’s weekly update session by clicking here.
5 January 2021
A national lockdown in England announced last night. You’ll find the latest lockdown rules on Gov.uk here: https://www.gov.uk/guidance/national-lockdown-stay-at-home
All of Wales is at alert level 4. You can find out what this means on Gov.wales here:
You can find details of the current restrictions in Northern Ireland here:
A national lockdown was also announced for Scotland yesterday. You can find the stay at home guidance for Scotland can be found here on Gov.scot:
People who are at more risk from coronavirus (who are called clinically extremely vulnerable) are now advised to take some additional steps to keep themselves safe. Sometimes this is called ‘shielding’. Adults who have Down’s syndrome were added to this list in November 2020.
In Northern Ireland medically-vulnerable and older people are asked to be particularly careful in following the advice on limiting household contacts, social distancing, hand washing and wearing a face covering.
Our daily DSEngage videos have restarted after the Christmas break. Last night’s Yoga session can be found on YouTube here.
Our next weekly Zoom update is this Friday (8 January 2021) at 10.30am. The half-hour session covers key issues relating to COVID-19 for people who have Down’s syndrome, their parents, carers and supporters.
If you would like to attend, register for your free place here.
New guidance for people who are on the Critically Extremely Vulnerable List in Tier 4
The guidance for people who are on the Clinically Extremely Vulnerable (CEV) list has been updated in light of the Tier 4 announcement this weekend and came in to force on 20 December. You can read the guidance in full here.
Clinically extremely vulnerable people across London, the South East and East of England have received further guidance on keeping safe as they are moved into the new Tier 4 restrictions.
The updated guidance, which is the same as was in place during November and which clinically extremely vulnerable individuals are strongly urged to follow, includes:
- Socialising: stay at home as much as possible, except to go outdoors to exercise or attend health appointments.
- Work: If people cannot work from home, they should not attend work. They may be eligible for Statutory Sick Pay, Employment and Support Allowance, Universal Credit or the Coronavirus Job Retention Scheme during this period. People in the same household who are not clinically extremely vulnerable can still attend work, in line with the new national restrictions;
- School: If a GP or clinician has advised that a child should remain on the shielded patient list, they are advised not to attend school during term times. Children who live with someone who is clinically extremely vulnerable, but aren’t themselves, should still attend school.
- Going outside: Avoid all non-essential travel – they should continue to travel to hospital and GP appointments as required unless told otherwise by their doctor. They are strongly advised not to go to any shops or to pharmacies, and government support is available for those who need it while they remain at home.
Those who are clinically extremely vulnerable but living in Tiers 1 to 3 should follow existing guidance – there is no formal shielding advice currently in place in areas outside Tier 4.
Letters will be going out to all those affected by the new shielding rules for Tier 4 areas later this week, although the government advises they may take slightly longer than usual to arrive due to the Christmas period. Anyone in Tier 4 areas who received the shielding letter in November and whose condition hasn’t changed should follow the advice immediately until they receive the letter. We will also be issuing letters by email for those who have registered an email address with their GP practice.
WALES: All of Wales is now at alert level 4. It went into national lockdown from midnight on Saturday, earlier than initially planned. The Welsh Government’s guidance on what people who are on the clinically extremely vulnerable list should do is available here.
NORTHERN IRELAND: Guidance over the Christmas period in Northern Ireland can be found here. Additional restrictions will be introduced for people in Northern Ireland on 26 December. Full details can be found here.
Today we released two new resources.
As reported at the weekend, people who have been classed as clinically extremely vulnerable and who live in England are now able to apply to have a four month supply of Vitamin D sent to them directly by the NHS, free of charge.
There is more information and a link to the form on this page: https://www.nhs.uk/conditions/coronavirus-covid-19/people-at-higher-risk/get-vitamin-d-supplements/
During autumn and winter, everyone is advised to take vitamin D to keep their bones and muscles healthy and to support their general health. This is particularly important if you’ve been indoors over the spring and summer as you may not have been getting enough vitamin D from sunlight.
The Government has today accepted the recommendation from the independent Medicines and Healthcare products Regulatory Agency (MHRA) to approve Pfizer/BioNTech’s Covid-19 vaccine for use.
This article from the BBC includes more details, as well as the confirmed prioritisation list for vaccines from the Joint Committee on Vaccination and Immunisation (JCVI). It puts people who are clinically extremely vulnerable in the same position as all those 70 years of age and over, as in the draft list (below).
The JCVI’s full report can be read here, including their final prioritisation list.
People who have Down’s syndrome moved higher up the vaccine priority list and offered free Vitamin D
Following the announcement of the draft vaccine priority list some weeks ago, we have been fighting hard to get people classed as Clinically Extremely Vulnerable (CEV) moved higher up the list. We are delighted to announce that has now happened!
People over the age of 18 who have Down’s syndrome were added to the CEV list at the beginning of November. The initial draft vaccine priority list placed the CEV as sixth in line, behind anyone 65 and over. The new draft list places clinically extremely vulnerable individuals in priority group four of nine, at the same priority level as those aged over 70.
The interim guidance, advised by the Joint Committee on Vaccination and Immunisation (JCVI), says the order of priority should be:
- Older adults in a care home and care home workers
- All those 80 years of age and over and health and social care workers
- All those 75 years of age and over
- All those 70 years of age and over and the clinically extremely vulnerable individuals, excluding pregnant women and those under 18 years of age
- All those 65 years of age and over
- Adults aged 18 to 65 years in an at-risk group
- All those aged 60 and over
- All those 55 and over
- All those aged 50 and over
Read more here.
A further piece of good news announced at the weekend is that people on the CEV list in England will now be able to apply to have a four month supply of Vitamin D sent to them directly by the NHS, free of charge. The process for registering for this will be announced shortly and we will share these details as soon as we can. The DSA wrote to the Department of Health and Social Care at the beginning of October requesting people who have Down’s syndrome be given Vitamin D.
‘These are two major steps forward that have happened as a direct result of the DSA advocating on behalf of people who have Down’s syndrome. We are extremely grateful to everyone who has contacted the DSA and those who have attended our weekly COVID 19 Update webinars. With your help, we have been able to gather evidence of the problems that people who have Down’s syndrome have been experiencing with COVID 19 and the implications of being added to the CEV list.
‘We are in constant conversation with the Department of Health and Social Care so that we can bring you the very latest information.’ – Carol Boys, Chief Executive, DSA
Yesterday afternoon the Government released advice for people who are on the clinically extremely vulnerable list for after the national lockdown in England ends on 2 December (next Tuesday).
There is general advice for everyone who is on the clinically extremely vulnerable list as well as additional advice based on the tiers of local restrictions in your area.
The advice sets out the additional things people at the highest risk from COVID-19 are advised to do to keep themselves safe for each tier.
To find out what tier you are in, there is a postcode search on Gov.uk: https://www.gov.uk/find-coronavirus-local-restrictions
You will find all the details of the new advice for people who are clinically extremely vulnerable here: https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/cev-from-2-dec
The Welsh Government’s guidance on what people who are on the clinically extremely vulnerable list should do is available here: https://gov.wales/coronavirus-regulations-guidance
Northern Ireland have entered a two-week period of additional restrictions. You can find the details here: https://www.nidirect.gov.uk/articles/coronavirus-covid-19-regulations-guidance-what-restrictions-mean-you
Yesterday evening the Government published its Covid-19 winter plan.
It confirmed that the lockdown in England will end on 2 December and that a strengthened tiered system of restrictions will come back into effect thereafter. We are expecting an announcement on Thursday about how the tiers will be applied across the country.
There is a summary of the plan here, which includes details of how the restrictions in each tier have changed: https://www.gov.uk/government/publications/covid-19-winter-plan/covid-19-winter-plan-summary
The document also states:
‘As the national restrictions end, the guidance to the clinically extremely vulnerable not to go to work or school will also end. The Government will reintroduce the specific advice for clinically extremely vulnerable people on how they can protect themselves at each tier.’
There is also further information about testing for support workers:
‘The Government recognises it is important to protect those receiving care in their own home, and while the risks are lower than for those in communal residences, many of those receiving care at home are vulnerable to COVID-19. The Government is therefore providing weekly testing to domiciliary carers working for CQC registered domiciliary care providers across England, using PCR tests initially from 23 November and moving to lateral flow testing once clinically validated for self testing.’
As soon as any additional details are made available we will share them with you here.
In response to last week’s reports from the Learning Disabilities Mortality Review Programme and Public Health England (see below) we are joining with umbrella organisation Learning Disability England to ask people to sign an open letter to Health Secretary, Matt Hancock. You can read the letter here and you can sign the letter here
Today saw the publication of two reports looking at the deaths of people who have learning disabilities during the first wave of the coronavirus pandemic.
- The Learning Disabilities Mortality Review Programme (LeDeR) produced an updated analysis of findings from their COVID-19 reviews.
- Public Health England (PHE) have published a report Deaths of people identified as having learning disabilities with COVID-19 in England in the Spring of 2020 which examined data from LeDeR and from NHS England’s COVID-19 Patient Notification System (CPNS) which records deaths in hospital settings.
We were very concerned to read that an analysis of data from the first wave of the pandemic indicates that people who have a learning disability were significantly more likely to die from COVID-19.
Issues around accessing COVID-19 testing for people who have a learning disability, the routine COVID-19 testing of staff supporting people who use services and the provision of accessible information are also highlighted as problematic.
Typically, adults who have Down’s syndrome live with their family or share a house in a supported living setting. It is of great concern to us to note that almost half of those adults who had Down’s syndrome and died from COVID-19 during the first wave, were living in a care home. More than half also had a diagnosis of dementia. Priority must be given to measures to prevent the spread of COVID-19 in these settings, including regular testing of care staff.
We now have a greater understanding of how the virus may affect particular groups of people and we now know that additional vigilance and care is needed in the support of adults who have Down’s syndrome, especially for those over the age of 40. This, together with better treatment interventions, should mean better outcomes for anyone who has Down’s syndrome who does become infected with COVID-19.
The addition of all adults who have Down’s syndrome to the list of those who are clinically extremely vulnerable will help people who have underlying health conditions to take extra care. However, professionals also need to ensure that adults who have Down’s syndrome continue to be treated as unique and individual and that the advisory guidance for those on the list is not imposed arbitrarily or without their consent.
We never lose sight of the fact that behind these statistics is a much loved individual and the loss of anyone who has Down’s syndrome is keenly felt by all of us. We are here to support all those who are concerned or have questions at this time.
T21RS statement on ‘shielding’ or confinement of individuals with Down syndrome during the COVID-19 pandemic
The chief medical officers of the U.K. have recently decided to add individuals with Down syndrome over 18 years of age to their “extremely vulnerable list” for COVID-19, which entails recommending their shielding*. Although the guidance is advisory in nature, this decision may affect the physical and mental health of people with Down syndrome. This decision may also unreasonably restrict opportunities for these individuals to participate in occupational, work and other activities, which could potentially impact on their socio-family environment.
This decision does not take into account the data recently reported in the international study promoted by the Trisomy 21 Research Society (T21RS)**. This work is the largest of its kind and investigated more than 1,000 cases of people with Down syndrome from around the world who had contracted COVID-19 between April and October 2020. The collected cases were reported by families and by clinical professionals, thus representing the best available information on people’s living conditions, pre-existing conditions and course of the disease.
The results of the study*** indicate that people with Down syndrome are a very heterogeneous group, whose risk factors for severe outcomes due to COVID-19 (hospitalization and death) are similar to those of the general population: age, diabetes, obesity, dementia, and male sex, with the addition of severe or untreated congenital heart defects as a potential risk factor for hospitalization in people with Down syndrome. It is critical to point out, however, that while in the general population the risk for poor outcomes of COVID-19 increases around 60 years, in people with Down syndrome it becomes more pronounced after age 40 and is increased in these older individuals compared to the general population of similar age.
Based on the results of this international study, we are reluctant to consider younger adults under 40 years of age and children with Down syndrome as an “extremely vulnerable group”, except for those individuals who have significant coexisting health concerns. With the data available to us, we do not consider the generalized confinement of the entire population of adults with Down syndrome to be sufficiently justified. The risk needs to be balanced against the potential negative consequences of confinement or shielding on the mental and physical health, and access to education (particularly for young people aged 17 – 25). Individuals with Down syndrome contribute to society in many ways, and the potential economic impact of work opportunity deprivation is also a concern for many adults.
Similar to current guidance for those in the general population, it is critical to emphasize the need for necessary precautions to reduce the spreading of infection, such as frequent and thorough hand-washing, social distancing, use face masks or face shields, and ensuring that immunisations and health checks are up to date.
* https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid- 19/
On behalf of T21RS COVID-19 initiative and stakeholders:
Down Syndrome Affiliates in Action (DSAIA), Down Syndrome Medical Interest Group-USA (DSMIG-USA), GiGi’s Playhouse, Jerome Lejeune Foundation, LuMind IDSC Foundation, The Matthew Foundation, National Down Syndrome Society (NDSS), the National Task Group on Intellectual Disabilities and Dementia Practices (NTG), Global Down Syndrome Foundation (USA), Down Syndrome Association (UK), Down syndrome medical interest groups (DSMIG UK and DSMIG USA), Down’s syndrome research foundation (DSRF-UK), Down Syndrome International (DSi), Down Syndrome Education (DSE international), Trisomie21-France, Down España, National Down Syndrome Congress (NDSC), Down Madrid, Fundació Catalana Síndrome de Down (Spain), CoorDown (Italy), Associazione Italiana Persone Down (AIPD; Italy), AFRT (France), Fundación Iberoamericana Down 21 (Spain), FIADOWN (Latin America), Federação Brasileira das Associações de Síndrome de Down (Brazil) and the European Down Syndrome Association (EDSA).
New guidance for Wales from Monday
The Welsh Government has released guidance on what people who are on the clinically extremely vulnerable list should do after their firebreak lockdown ends on Monday. You can find their guidance here: https://gov.wales/coronavirus-regulations-guidance
The following points have been extracted from the Welsh Government guidance and are only applicable in Wales:
Will shielding be resuming?
There are no plans to resume shielding at this time.
When we initially advised people who are extremely vulnerable to take strict shielding measures at the start of the pandemic, the position was very different – there were no measures in any sector of society to reduce the spread of the virus and no rules or regulations in place. Now, with consistent measures in place, asking people to shield at home again is not the best option at this point in time as it could cause harm to people’s mental and physical health.
What is the latest advice to people who were shielding?
The advice for the shielded population is the same for everyone. You should keep contacts with other people to a minimum, keep a 2m distance from others, wash hands regularly, wear a face covering where required and avoid touching surfaces others have touched, wherever possible. Consider what time of day you go out and where you are visiting i.e. avoid visiting shops at peak times.
Where possible you should continue to work from home.
What if I have been shielding, can I go to the shops?
Yes, the advice to shield has been paused so you no longer need to avoid all shops. However, you should still be very careful so should shop at quieter times, should make sure you maintain a 2m distance from others and wash your hands or use hand sanitiser regularly.
The main things we are asking people to do are:
- Stay out of each other’s homes, except in very limited circumstances
- Limit the times you leave your home, and the distance you travel
- When you do leave home, please try and be restrained in how many different people you see. It is better to see the same one or two people regularly than to see lots of different people occasionally
- maintain social distancing, including outdoors
- meet people outdoors rather than indoors where possible, even in circumstances where the law allows you to meet indoors
- Work from home if you can
- Wash your hands regularly and follow other advice on hygiene
- Self-isolate if you show symptoms of coronavirus
A new blog post from Carol, our Chief Executive, reflects on the last few days and the impact of the announcement. Read Carol’s blog here.
Today the Department of Health and Social Care (DHSC) (England) have released new guidance on visiting arrangements in care homes during the second national lockdown (5 November to 2 December, at time of writing).
You can view the guidance on Gov.uk here: https://www.gov.uk/government/publications/visiting-care-homes-during-coronavirus
New government guidance for people on the clinically extremely vulnerable list in England
People on the clinically extremely vulnerable list in England have today received further guidance from the Department of Health and Social Care on keeping safe as the country introduces new national restrictions from Thursday.
Yesterday (3 November), it was announced that adults (18+) who have Down’s syndrome have been added to the list of people who are classed as clinically extremely vulnerable. Read more below.
Everybody in England must follow the national lockdown guidance from Thursday, which can be found here.
In addition, the Government are advising people in England who are clinically extremely vulnerable to take the following precautions. Advice to people who are clinically extremely vulnerable has always been and continues to be advisory.
- Socialising: Stay at home as much as possible, except to go outdoors to exercise or attend health appointments. People can exercise with those they live with or in their support bubble;
- Work: If people cannot work from home, they should not attend work. They may be eligible for Statutory Sick Pay, Employment and Support Allowance, Universal Credit or the Coronavirus Job Retention Scheme during this period of national measures. People in the same household who are not clinically extremely vulnerable can still attend work, in line with the new national restrictions;
- School: As evidence has shown there is a very low risk of children becoming very unwell from Covid-19, most children originally on the shielded patient list no longer need to be and therefore can still attend school. If they are unsure, parents should contact their child’s usual GP or hospital clinician to check whether they should still be considered clinically extremely vulnerable. If a GP or clinician has advised that a child should remain on the shielded patient list, they are advised not to attend school. Children who live with someone who is clinically extremely vulnerable, but aren’t themselves, should still attend school.
- Going outside: Avoid all non-essential travel – people should continue to travel to hospital and GP appointments unless told otherwise by their doctor. They are strongly advised not to go to any shops or to pharmacies.
Deputy Chief Medical Officer for England Dr Jenny Harries said:
‘We have previously said that where the conditions of transmission of the infection alters significantly we would alert patients in relative regions.
With the prevalence of the virus continuing to increase across England and in places across the world, it’s right that we adjust our advice for the clinically extremely vulnerable accordingly so they can feel as safe as possible over the coming few weeks.
Our guidance for this group of individuals has always been advisory, but I would strongly urge all those who are clinically extremely vulnerable to take these extra precautions to keep themselves as safe as possible.’
Individuals in this group will also be able to use an online service which will help people to request priority access to supermarket delivery slots and to inform their council they need help. NHS Volunteer Responders can also help with a regular, friendly phone call, and transport to and from medical appointments: https://www.gov.uk/coronavirus-shielding-support
These new shielding measures will apply nationally for 4 weeks up to 2 December. At the end of the period, we will look to return to a regional approach and will issue further guidance at the time.
The new national restrictions will come into force from Thursday and are set to be reviewed on 2 December.
Keeping safe from coronavirus: new guidance for adults who have Down’s syndrome
From this week, adults (18 and over) who have Down’s syndrome are to be added to the group of people who are classed as clinically extremely vulnerable. This means that they have been classed as at higher risk from coronavirus. The decision has been agreed across all four nations of the UK by their Chief Medical Officers.
People who are in the clinically extremely vulnerable group are advised to be extra careful in protecting themselves. In England GPs have been asked to contact their patients who are affected by this decision over the next few weeks to discuss what it means for them and their specific health needs. Adults who have Down’s syndrome and their families are encouraged to seek advice if they do not hear from their GPs in the next few weeks. Information about what it means to be on the clinically extremely vulnerable list can be found via the government website.
We are working separately with the Welsh Government who will be communicating with adults who have Down’s syndrome living in Wales once the national circuit-breaker lockdown ends there on 9 November.
UPDATE: Click here to download a Q&A document from the Department of Health and Social Care on the decision to add adults who have Down’s syndrome to the list of people who are clinically extremely vulnerable. They have also created an easy read version which you can access here.
Research based decision
The Government’s decision is based on research undertaken to better understand who is more vulnerable to coronavirus. The research on which the decision has been based was published last week in the British Medical Journal (BMJ) and the Annals of Internal Medicine. The research demonstrates an increased risk based on the data that was analysed.
The DSA wants every adult who has Down’s syndrome to be able to keep themselves as safe as possible from coronavirus. We have produced some new accessible resources to help people who have Down’s syndrome stay safe, well, and positive, and on making choices and asking questions. They are called ‘Staying safe’, ‘Staying well and healthy’ and ‘Supporting me to make a decision: A Quick Guide’.
We have also produced a film where DSA ‘Our Voice’ member Sam explains what ‘clinically extremely vulnerable’ means.
We all need to understand how best to keep safe and how to stay well, emotionally, and physically. We want to empower people who have Down’s syndrome to make their own decisions (within the guidance issued), with support from their families and supporters, and to ask questions about any decisions made for them where they have not been give accessible explanations.
The DSA and other stakeholders have been engaging with the Department of Health and Social Care, the Welsh Government and NHS England to help them understand the implications of this decision, and to develop appropriate communication and support for people who have Down’s syndrome. We have been informed that very few children are at highest risk of severe illness due to the virus and that research studies have not found evidence that children who have Down’s syndrome are at higher risk than children who do not have Down’s syndrome.
We understand that the findings of the new research are worrying, and that being added to the group of people who are clinically extremely vulnerable will prompt many different reactions…from relieved, to worried, to upset. How it effects the way people live their lives will need careful consideration and support to make the decisions that are right for them as individuals (within the guidance issued) and the communities they are part of.
Unique and individual
The DSA wants to assure each and every person in our community that we are there for them and fighting for what is best and right. We will continue to advocate strongly for the unique and individual needs of every person who has Down’s syndrome.
The LeDeR programme investigates the circumstances surrounding the death of someone with a learning disability. We have written to the Head of the LeDeR programme to ask specifically what can be learnt from the deaths from COVID-19 to ensure the best possible care and interventions are offered.
Our website will be updated with new information as soon as we get it, and we will be producing Easy Read guidance every step of the way. Our Helpline is open Monday to Friday. Although we are unable to give individual clinical advice, our resources provide information about how to stay safe, well, and how to support individuals to make decisions that are right for them.
We realise that this news may be unexpected for some of you, but we are here to help the 40,000 people in the UK who have Down’s syndrome and their families and carers.
UPDATE (05/11/2020) Current furlough scheme (CJRS) now extended until March 2021, mortgage payment holiday scheme extended and Minimum income floor for self employed on UC suspended for another 6 months (was due to end Nov).
The furlough scheme launched in March will now come to an end in March after being extended due to the announcement of the second lockdown commencing 5 November. There will also be an announcement by the FCA concerning the extension of mortgage ‘holidays’ for those affected financially.
Self Employed Universal Credit
The minimum income floor for those claiming Universal Credit has been suspended for another 6 months. It was due to end 12 November and will now end in April 2021. The temporary removal means that UC is calculated using actual income and not the assumed income normally used in the calculation (which is roughly minimum wage). This allows those earning less than the minimum wage to receive more help than the regular calculation.
New easy read resources
This easy read reflects the updated situation and explains what people who have Down’s syndrome can do to stay safe.
This easy read will help people who have Down’s syndrome think about what they can do to look after themselves.
Job Support Scheme
The furlough scheme launched in March comes to an end in October and a further announcement has been made by the chancellor that it will be replaced by a wage subsidy scheme. This scheme is called the job support scheme.
As it was unfairly penalising small businesses and part time workers when announced in September, further changes have been made with the government contributing more to the scheme. The new criteria effective 1 November is below.
- The scheme will ‘top up’ the pay of those people who are brought back to work by the employer but now only able to work 20% or more of their normal hours.
- The employees who are working less than their usual hours due to low demand will be paid by their employer for the hours actually worked and then they will have their ‘lost hours’ topped up to cover 2/3rds of the wage that they usually receive.
- The government will now pay just under 62% of the lost hours and the employer will now only have to cover 5% of these lost hours.
- This will cover 73% of the daily wage where earnings are £3125 a month or less and will run for 6 months from 1 November. It is open to all employers even if they have used the furlough scheme previously.
For more information please head to www.gov.uk and search for Job support scheme
As we head into winter, it is even more important to stay healthy and active, whilst adhering the Government guidelines on social distancing and any additional restrictions you may have based on your individual health needs and on which Tier your local area is in.
For the latest Government classification of your area please look here: https://www.gov.uk/find-coronavirus-local-restrictions
The DSActive team were glad to hear that disability sport is still able to continue indoors, as we know how important these sessions are to the health and wellbeing of participants. Sessions should adhere to the National Governing Bodies Return to Play guidelines for each particular sport. Further information on these can be found on the Sport England website.
For those who do not feel comfortable playing indoor or outdoor sport, there are other ways to keep healthy during this winter.
Activities such as walking, running, dancing and indoor workouts can be done with your household. There are examples of indoor workouts you can do on our website here: https://www.downs-syndrome.org.uk/coronavirus-covid-19/keeping-fit-and-healthy-at-home/
Additionally, making sure you eat a healthy diet is very important and will help keep your immune system strong. The Health Swap app has plenty of recipes to try out, as well as an activity tracker to help you keep a track of how much exercise you are doing.
Please email the DSActive team if you have any queries on firstname.lastname@example.org or call our Helpline and speak to one of our Information Officers on 0333 1212 300.
The furlough scheme comes to an end in October and an announcement has been made by the chancellor that it will be replaced by a wage subsidy scheme
- The scheme will ‘top up’ the pay of those people who are brought back to work by the employer but now only able to work a third or more of their normal hours. Those working less than a third will not be eligible for the scheme.
- The employees who are working less than their usual hours due to low demand will be paid by their employer for the hours actually worked and then they will have their ‘lost hours’ topped up to cover 2/3rds of the wage that they usually receive. The government contribution will be capped at £697.92 per month. The government will pay 1/3 of the lost hours and the employer will cover the other third of these lost hours
- This will cover 77% of the daily wage and will run for 6 months from 1 November. It is open to all employers even if they have used the furlough scheme previously.
For more information please head to www.gov.uk and search for Job support scheme
Working parents or carers, who are eligible for Tax-Free Childcare or 30 Hours Free Childcare but have temporarily fallen below the minimum income requirement because of coronavirus, will continue to receive financial support until 31 October 2020.
Critical workers who may exceed the income threshold for the 2020 to 2021 tax year, as a result of working more to play a vital role in tackling coronavirus, will continue to receive support this tax year.
You can check if this change affects you here: https://www.gov.uk/guidance/check-if-you-can-get-tax-free-childcare-and-30-hours-free-childcare-during-coronavirus-covid-19
The Department for Education has released guidance for special educational settings to prepare for the September return of pupils with special education needs and disability (SEND). The information is available here: https://www.gov.uk/government/publications/guidance-for-full-opening-special-schools-and-other-specialist-settings
The first set of data has now been analysed. Thank you to all the families and clinicians in the UK who have completed the online questionnaires. Whilst we are aware that children and adults who have Down’s syndrome will differ in terms of underlying health conditions they may have, the initial findings give some reassurance that the experience (and likely recovery from) COVID-19 is pretty similar to the general population, save for an age effect. We know that, in the general population, older people are more likely to experience more significant illness from the virus and for people who have Down’s syndrome, this seems to be for adults aged 40 and over.
- Monitor for the same symptoms as in the general population, plus nasal symptoms in younger patients with Down syndrome
- Protect those over age 40: risk for fatality more common in middle-aged individuals
- Younger individuals ( below 20 years) do not often present with severe disease
- More survey data are needed to confirm these conclusion
The researchers are still actively collecting data and so if anyone you know of who has Down’s syndrome that has been directly affected by the virus, please complete the online surveys here: https://www.ds-int.org/blog/down-syndrome-covid-19-survey
If you would like to discuss any of the issues the results of survey raises, do call our Helpline on 0333 12 12 300 for an opportunity to talk to one of our Information Officers.
The government has released new guidance on supporting children and young people with SEN as schools and colleges prepare to reopen. Below we have listed some of the key points from the following guidance for parents and carers on what to expect, whether your young person will be returning to school or will be remaining at home. You can read the full guidance here: https://bit.ly/2X4L88q
- Risk assessments should be undertaken for children with an ECH plan, to determine whether it is safer for the child to remain at home or they are able to return to school
- Risk assessments should be kept up to date to reflect any changes in circumstances or changes to coronavirus alert levels
- It us up to the LA and education setting to decide if they wish to continue the risk assessment once the child has returned to school
- It is recommended that risks assessments are maintained for children with EHC plans who are remaining at home
- As part of updating risk assessments LA’s and education settings should be mindful of parents and caregivers not being able to sustain the level of care and support their child needs for a long period of time. Also taking into account the level of access the short breaks services, loss of support from extended family and risks of health from caring for children with complex needs without additional support.
- If families are unable to continue supporting their child at home, LA’s and education settings should work together with parents and carers to ensure that their child (in any year group) can return promptly to their education setting.
- If a risk assessment determines that a child should remain at home LA’s and education settings should consider the moving of equipment and services into the child’s home. This may include physiotherapy equipment, sensory equipment, online sessions with different types of therapists, phone support for parents on how to deliver interventions and in-person services where necessary.
EHC plan provision
- LA’s and education providers need to work together to consider what can be reasonably provided for children with an ECH plan during this temporary period, due to the modification of the children and families act 2014 (creating a statutory duty to deliver the provision specified in an ECH plan) . LA’s and schools must use ‘reasonable endeavours’ to secure and arrange provision specified in the plan
- From the 15th of June specialist post 16 provision (as well as secondary schools and sixth forms) should work towards welcoming back as many young people as can be safely catered for. Specialist provisions are encouraged to use flexible approaches in order to do this such as part time timetables, a combination of on site and home learning and phased returns for individuals or groups.
Adhering to increased hygiene standards
- It is not possible to provide the care that some children and young people need without close hands on contact. Therefore in these circumstances staff should minimise contact where possible, increase hand washing, clean surfaces more regularly and maintain existing routines use of PPE
We will continue to create easy read resources to support people with Down’s syndrome in these times of change. We will soon be releasing accessible information for children on returning to school, this will be available to download via our website and social media channels.
Our Benefits and financial help page has been updated today with information about several recent announcements including the extension of the job retention scheme, the extension of the mortgage holiday scheme, the Family Fund for extremely vulnerable families (below) and more.
The Government has announced extra funding for families on low incomes if their children have complex needs or disabilities.
The £37.3 million settlement for the Family Fund, detailed today by Children and Families Minister Vicky Ford, will help low-income families with children up to age 18 who are seriously ill or disabled.
£10 million of this amount has been dedicated to help with difficulties that have arisen due to the covid 19 pandemic because children have had to stay at home more than usual.
As it has in the past, it can help with the cost of equipment, goods or services from bedding, clothing (if there is extra wear and tear), tumble dryers, washing machines, computers, refrigerators to sensory and educational equipment that they might not otherwise be able to afford
The grants will be accessed through The Family Fund, an independent charity funded by the Government which has helped many of our families over the years. It is means tested and you can check if you are eligible on the link below
Their website is https://www.familyfund.org.uk/
If you prefer to call, their telephone number is 01904 550 055.
You can read the full announcement here: https://www.gov.uk/government/news/37-million-to-support-children-with-complex-needs
Supporting individuals who have Down’s syndrome and their families through difficult times.
‘We will be there, asking relevant questions, however difficult these may be.’ A broken system, mental well-being and mortality figures are just some of the subjects we cover in our latest statement in regards to the pandemic and supporting individuals who have Down’s syndrome.
Returning to school/college
Just as public debate focused on when schools in the UK should close because of the COVID-19 pandemic, we are aware that the issue of children with Down’s syndrome returning to school is now causing many families a degree of anxiety. This is understandable, everyone’s’ prime motivation must be to keep our children and young people safe and well.
We must remember that all children with Down’s syndrome are unique individuals and must be treated as such. It would therefore be unhelpful for us to develop a position statement regarding pupils with Down’s syndrome that treated everyone the same. Every child will have a profile of needs which will encompass their medical history and any underlying health conditions. This will determine how easily a child’s transition back to school can be planned for.
The Government has described a category of pupil considered to be ‘vulnerable’ and this includes children who have an Education, Health and Care Plan. The Government has also recently published a guidance document specifying that schools must undertake a risk assessment of all vulnerable children in a school to determine whether the needs of a particular child are better met at home or at school, whilst the COVID-19 situation remains:
Only those involved in knowing the particular circumstances of a child can make an assessment of risk and this must include the views of the family and the child or young person. We support this approach and hope that schools will work collaboratively with families to agree a plan that works best for each child.
Some families may make the decision that their child’s needs will be best met by a return to school (even if this on a part-time basis), whilst others may remain at home.
For those children and young people who remain at home, the Government document stipulates how support from the local authority should be provided. We feel this is paramount.
A phased reopening of schools is proposed in England sometime after 1 June (provided certain indicators are met). Governments in Wales and Northern Ireland have announced have indicated a different timeframe and we await further announcements in due course.
From the Government – what you can and can’t do: https://www.gov.uk/government/publications/coronavirus-outbreak-faqs-what-you-can-and-cant-do/coronavirus-outbreak-faqs-what-you-can-and-cant-do
It has been announced that those people who cannot work their normal hours will not see any change in their Tax Credits if their hours reduce. Please see the official link below:
Lauren’s Mum has kindly written a post for us sharing their experience of Lauren being hospitalised with coronavirus: https://bit.ly/2VZBcwi
It’s great to hear about the care that Lauren received and wonderful that she is now back home and recovering well.
It’s great to read about Sarah’s experience of recovering from covid-19. We which her all the very best and a swift and full recovery.
Additional education resources added to the Learning at home page:
- BBC Bitesize have pulled together a collection of their resources suitable for SEND. See what’s available here.
- For the duration of the lockdown, PhonicsPlay are providing free access to their resources.
Visit the website to get the details.
- The Oxford Owl website (from Oxford University Press) has a wealth of resources for teaching and reading. They include free ebooks (Biff, Chip and Kipper and Winnie the Witch) and lots more.
Get exploring here.
- There’s a great collection of ideas for sensory play from the Mothercould blog in this pdf.
- DKFindOut is jam packed with information about all sorts of subjects and is designed for children to search, learn, and explore information on a safe and secure site.
Click here to start exploring.
- Try something a little different with CoolMath Games.
The Coronavirus National Testing Programme in England has now expanded capacity to test other frontline workers who are having to self-isolate due to having coronavirus-like symptoms or because a member of their household has symptoms.
This expansion includes social care staff and personal care assistants (PAs), across both health and social care, who meet the criteria set out above.
See all the details, including how to arrange a test, here: https://bit.ly/2zdn9Kz
Can you help with this study?
The Trisomy 21 Research Society (T21RS), with the endorsement of many international Down’s syndrome organisations, are collecting vital information to understand the risks and course of COVID-19 among people with Down’s syndrome.
The goal is to see if people with Down’s Syndrome are more vulnerable or have a different course of illness related COVID-19 and if their illness is related to their pre-existing health profile.
You are invited to complete this survey about the person with Down’s Syndrome for whom you provide care and has tested positive or has symptoms of COVID-19. Click below for the survey.
The survey will take about 10-20 minutes to complete. It asks for:
- general information about the person
- their pre-existing conditions
- whether they were tested for COVID-19
- COVID-19 symptoms
- treatments and outcome.
The survey is completely anonymous.
There is an option at the end to send a Clinician Survey to the doctor who cared for the person you support.
T21RS aim to release results every two weeks starting from the week of 20 April to ensure that the information can be available to families and clinicians as it becomes available.
Thank you for your time.
Link to survey: https://redcap.emory.edu/surveys/?s=98DMP3CCN8
Last week (8 April) the NHS announced that visiting is suspended for the foreseeable future.
The document however made clear that exceptions include when you ‘…are supporting someone with a mental health issue such as dementia, a learning disability or autism, where not being present would cause the patient to be distressed’.
We have added this information to our document on being prepared for hospital admissions.
We have been receiving quite a number of enquiries from families unsure of how they can best support their family member who has Down’s syndrome during this period when we are dealing with the COVID-19 pandemic.
It is clear that all individuals with Down’s syndrome would be considered as “vulnerable” due to their learning disability. This is because:
1. People with a learning disability often experience health inequalities, making access to some NHS services more difficult;
2. Some people with a learning disability may find it harder to communicate symptoms and so may need greater vigilance to assess whether they have become infected (especially in the early stages) or if they are becoming more unwell and in need of medical intervention;
3. Some individuals with a learning disability may find it harder to understand the concepts of social-distancing and may be reliant on people coming into their home to provide personal care, making social-distancing more difficult;
4. A proportion of individuals with Down’s syndrome may additionally have other underlying health conditions (especially cardiac and respiratory conditions).
Additionally, some people with Down’s syndrome will meet the criteria for being considered as “extremely vulnerable” . If so, they should have received a letter from the NHS confirming this. People in this group will have one of these additional health conditions :
1. Solid organ transplant recipients.
2. People with specific cancers:
• people with cancer who are undergoing active chemotherapy
• people with lung cancer who are undergoing radical radiotherapy
• people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
• people having immunotherapy or other continuing antibody treatments for cancer
• people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
• people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs
3. People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD.
4. People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell).
5. People on immunosuppression therapies sufficient to significantly increase risk of infection
If you feel that the person you support might be in the ‘extremely vulnerable’ group but have not been contacted by the NHS, please follow this up with your GP or paediatrician.
Guidance from the NHS on how best to support ‘vulnerable’ and ‘extremely vulnerable’ people is available here: https://bit.ly/3c3ghgZ
If you would like to discuss any of these issue, please be assured our helpline is operating as normal on 0333 12 12 300.
Dr Rhonda Faragher from the University of Queensland, Australia, has shared ten top tips for teaching your child with Down’s syndrome at home. Click here to download the pdf.
This Friday we’ll be holding the next event in our Adults closed Facebook group: The DSA Supporting Adults and Parents and Practitioners Group.
We’ve been inspired by one of our group members, Helen. Each week she has been doing ‘Fancy Fridays’…a special day to dress up in smart clothes.
We really like this idea as it reminds us to look after ourselves. ‘Fancy Fridays’ give us a reason to dress up smart, do our hair, put on makeup if we like, maybe have a shave, do something we enjoy and feel good.
We’d like to invite you to join us this week for a ‘Fancy Friday’ Event (5pm – 6pm) and to make it a special day for you and people you are with.
The plan is:
- Dress up in smart clothes.
- Cook a tasty meal.
- Do a special activity
- Share what you have been doing on our Facebook group.
- Feel Fabulous
This is an event for adults who have Down’s syndrome, their support and parents. Join the group to find out more.
It is vital that you continue to be vigilant about all health concerns that require professional medical help and advice, including common childhood infections.
You should not delay seeking medical advice on account of the current situation with Covid-19.
Please read the articles from The Journal Preventing infection in children with Down’s syndrome by Dr Liz Marder and Recognition of Serious Illness in Children with Down’s syndrome by Dr Liz Herrieven (you can download both articles here) and see the latest statement from DSMIG (4 April 2020).
The Coronavirus Act, which became law in March 2020, outlines a number of measures that directly impact on people eligible for local authority/NHS funding for care and support, or people who are waiting for an assessment.
This easy read guide explains some of the key changes the Act act brings and gives some examples of how it may be applied in practice.
You can download the document here or by clicking on the image to the right.
Public Health England (PHE) have published an easy read document that explains the rights of people who have a learning disability, autism or both and how they should be treated by medical staff during the the coronavirus pandemic.
We will be hosting a Facebook event this Sunday 11am-12pm to share ideas on staying happy and healthy at home.
This is an event for adults who have Down’s syndrome and parents/carers. It will take place in our Adults closed group: The DSA Supporting Adults and Parents and Practitioners Group.
We want to know what you have been doing to stay happy and healthy at home.
Please come with
- pictures of activities you’ve been doing or meals you’ve cooked
- projects you’re working
- ideas of things to stay busy
It is important that we keep talking to each other at the moment, and sharing ideas on how to stay positive and motivated.
It’s going to be a lot of fun and we will all get ideas of things to do at home.
To join in please just enter the group at 11am.
When you find the group, click the Join Group button.
You will have to answer three questions.
- Are you over 18 years old?
- Are you a person who has Down Syndrome, or a parent, carer or practitioner supporting an adult who has Down Syndrome?
- If a practitioner, what is your professional role?
If you need support, you can ask someone to help you answer these questions.
Kate Powell has shared another blog about her lockdown experiences. Read about how she celebrated her Dad’s birthday and more by clicking here.
We have added some tips from our Information and Training team on developing language skills at mealtimes to the Learning at home page.
Our Keeping fit and healthy at home page has been updated with some more films from our DSActive team…there are lots of ideas for exercises and activities to do at home.
The National Trading Standards’ Friends Against Scams site have shared this infographic of potential scams to watch out for at this time.
We have updated our information about the benefits and financial help available.
It includes information about yesterday’s announcement of support for people who are self-employed. The Chancellor set out plans that will see the self-employed receive up to £2,500 per month in grants for at least 3 months.
While most people with Down’s syndrome are unlikely to be admitted to hospital for complications arising from coronavirus, we think it is best to be prepared in the event that your loved one is admitted to hospital at short notice.
We have put together some suggestions together to help you to think about it. Click here to download the factsheet on the image to the right.
NICE have now updated their COVID-19 rapid guideline: critical care in adults guidance. You can read their statement here.
In particular we would like to draw your attention to the following paragraph in the actual guidance.
‘On 25 March 2020, we amended recommendations 1.1, 2.2 and 2.4 to clarify that the Clinical Frailty Scale should be used as part of a holistic assessment, but should not be used for younger people, people with stable long-term disabilities, learning disabilities or autism We also changed the title of the guideline to clarify that it only applies to adults’.
We have updated our information about the benefits and financial help available. It now includes information for WorkFit candidates.
We’ve also updated our easy read document on social distancing to reflect the latest advice. Click here to download the latest copy.
Supporting young people and adults through times of change
For parents, carers and supporters
We are all living with change and a certain degree of uncertainty at the moment.
We know that sameness and predictability can help people with Down’s syndrome to feel secure and in control. However, many people’s daily lives and routines have recently been, or will be, disrupted.
We thought it would help you as parents, carers and supporters to put together some ideas that may help you to support people who have Down’s syndrome at this time of change.
You can download the publication here or by clicking on the image on the right.
Vinay, who is one of our colleagues, has got some top tips for exercising at home that we’re re-sharing for everyone in lockdown.
We have written to the Health Secretary Matt Hancock and asked for reassurance and clarification for our members. For people worried about how the NICE guidance about critical care interventions may be interpreted for their loved ones who have Down’s syndrome, please see the following information. The final paragraph states the scale has ‘not been widely validated in younger populations (below 65 years of age), or in those with a learning disability’. We will keep you updated with any replies we receive.
Our specialist adviser in adult social care and support, Chris Watson, has written a briefing on the Coronavirus Bill and what it may mean for adult support and social care. You can download the briefing document (pdf) here or read the information online here.
We’ve updated our ‘..at home’ pages.
We have updated our information about the benefits and financial help available.
The Government have just announced extra help, in addition to help already available, for those facing hardship:
We’ve just published a short resource for parents, carers and supporters.
This short document has been adapted from our forthcoming Emotional well-being series.
The document’s key message is: be kind to yourself…if you don’t look after yourself, it can make it harder to support someone else’s emotional well-being.
You can download the publication here or by clicking on the image to the right.
We’ve included it in the Resources from the DSA page.
Everything that the Down’s Syndrome Association stands for promotes equality of access for individuals who have Down’s syndrome. Nowhere is this more important than in access to healthcare.
Children and adults with Down’s syndrome have unique and valued lives and should, of course, enjoy the same protection of their Human Rights as everyone else. Families must be fully involved in decisions relating to their relative with Down’s syndrome.
We urge everyone across the community to work together in these unprecedented times to ensure that our NHS and individual clinicians have all the support they need to treat patients to the very best of their ability and preserve the lives of anyone affected by the current COVID-19 pandemic, including our loved ones with Down’s syndrome.
If you have any evidence of discrimination please email us at email@example.com.
We have updated our information about the benefits and financial help available.
It now includes information about an increase to Working Tax credits. The government has announced that Working Tax Credits payments will be increased by £20 per week from 6 April 2020.
We have updated our information about the benefits and financial help available. Click here to read the information or download the document.
We have now published an easy read document that explains what social distancing means. You can download a copy of the document by clicking here.
We have also published information about the benefits and financial help that is available. This will be updated as information becomes available.
We are collecting together links to external resources that can be used during social distancing or self-isolation to help us keep healthy, keep on learning and help us relax and enjoy our time at home.
We would welcome recommendations and suggestions to review. Please email firstname.lastname@example.org.
19 March (Adults)
Impact of the Coronavirus Bill on social care:
We think, in essence, that LA’s will now be deploying social work staff to focus only on people who are at higher risk of some kind of support package/carer breakdown and it will mean that they stop most of their non essential business as usual activities i.e. statutory annual reviews. We think they will target resources around reviews and assessments to only those people where some kind of urgent need has been identified that is life threatening.
We updated our Easy Read document to reflect the most current information. Download the document here.
16 March (Adults)
The government has provided guidance for all adults who have a learning disability (who are listed as vulnerable adults) about social distancing.
We updated our Easy Read document to reflect the most current information. Download the document here.