Latest coronavirus news

2 July

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://bit.ly/3ipQzr5

19 June

Covid-19 and Down’s syndrome T21RS Survey, report 27 May 2020

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.

The Key messages from the study are :

  1. Monitor for the same symptoms as in the general population, plus nasal symptoms in younger patients with Down syndrome
  2. Protect those over age 40: risk for fatality more common in middle-aged individuals
  3. Younger individuals ( below 20 years) do not often present with severe disease
  4. 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.

27 May

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

Key Points

Risk Assessments

  • 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

Post 16

  • 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.


22 May

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.


20 May

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


14 May

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.


12 May

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:

https://www.gov.uk/government/publications/coronavirus-covid-19-send-risk-assessment-guidance/coronavirus-covid-19-send-risk-assessment-guidance

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.


11 May

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


4 May

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:

https://www.gov.uk/government/news/tax-credits-customers-will-continue-to-receive-payments-even-if-working-fewer-hours-due-to-covid-19


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.

 


27 April

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:

22 April

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

You can find information about testing in Wales here and for Northern Ireland here.


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:

  1. general information about the person
  2. their pre-existing conditions
  3. whether they were tested for COVID-19
  4. COVID-19 symptoms
  5. 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


14 April

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.


9 April

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.


8 April

We’ve added more videos from our DSActive team with great ideas for keeping fit and healthy at home to YouTube and the website.

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.


7 April

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.


6 April

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.

 

 


3 April

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.

If you’re not a member yet, click here or search The DSA Supporting Adults and Parents and Practitioners Group on Facebook.

When you find the group, click the Join Group button.

You will have to answer three questions.

  1. Are you over 18 years old?
  2. Are you a person who has Down Syndrome, or a parent, carer or practitioner supporting an adult who has Down Syndrome?
  3. 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.


31 March 

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.



27 March

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. 

https://www.gov.uk/government/news/chancellor-gives-support-to-millions-of-self-employed-individuals 

Click here to read all the information or download the updated document.


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.

 

 


26 March

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.

Click here to read all the information or download the updated document.


We’ve also updated our easy read document on social distancing to reflect the latest advice. Click here to download the latest copy.


We’ve just published the second document adapted from our forthcoming Emotional well-being series.

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.

Read his blog post here.


25 March

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.


Kate Powell, who edits our Down2Earth Magazine, has blogged about what she’s up to while she’s at home because of the coronavirus lockdown. Read her blog here.


We’ve updated our ‘..at home’ pages.

There are new links to resources for learning, and a new page with ideas for fun and relaxing things to do.


24 March

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:

https://www.gov.uk/government/news/government-confirms-500-million-hardship-fund-will-provide-council-tax-relief-for-vulnerable-households

Click here to read all the information or download the updated document.


We’ve just published a short resource for parents, carers and supporters.

A reminder to look after ourselves
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.

 

 

23 March

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 info@downs-syndrome.org.uk.


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.

Click here to read the updated information or download the document.

21 March

We have updated our information about the benefits and financial help available. Click here to read the information or download the document.

20 March

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 info@downs-syndrome.org.uk.

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.

13 March (Adults)
Public Health England have published covid-19 guidance for supported living provision.

We updated our Easy Read document to reflect the most current information. Download the document here.