down's syndrome association

The Down's Syndrome Association London Branch was formed in June 2000 to try to meet the needs of a number of young children with Down's Syndrome and their families. A proportion of individuals with Down’s syndrome may additionally have other underlying health conditions (especially cardiac and respiratory conditions). In addition, the Government are advising people in England who are clinically extremely vulnerable to take the following precautions. Becca said: “I am grateful for the support in enabling these cards to reach even more people. 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/. Please click here for the questionnaire: https://fpse.qualtrics.com/jfe/form/SV_ebyVghEvk9HOjSC. 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. The Canadian Down Syndrome Society is a Registered Charitable Organization in Canada Charitable Tax Number 11883 0751 RR 0001 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. Phone: 630.325.9112; Email: info@nads.org To support people who have Down's syndrome to live full and rewarding lives. Additionally, making sure you eat a healthy diet is very important and will help keep your immune system strong. The new criteria effective 1 November is below. Down's Syndrome Association Nonprofit Organization Management Teddington, Middlesex 2,562 followers Supporting people who have Down's syndrome to live full and rewarding lives. What if I have been shielding, can I go to the shops? The following points have been extracted from the Welsh Government guidance and are only applicable in Wales: There are no plans to resume shielding at this time. where possible, visitors can be given support on how to prepare for a visit and given tips on how to communicate if face coverings are required, for example: not wearing hats or anything else that might conceal their face further, wearing clothing or their hair in a way that the person they are visiting would more likely recognise, 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 70 years of age and over and the clinically extremely vulnerable individuals, excluding pregnant women and those under 18 years of age, Adults aged 18 to 65 years in an at-risk group, Public Health England (PHE) have published a report, 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. IMPORTANT UPDATE. This is a follow-up study to further investigate how the progression of the coronavirus (COVID-19) pandemic is still impacting on individuals who have additional needs and their families, and whether this impact has changed from lockdown 1 in March 2020. Our daily DSEngage videos have restarted after the Christmas break. If the person is clinically extremely vulnerable then the currently applicable, providers could offer support so people can find/go to outside spaces to see their relative in a safer environment in line with current social distancing rules, visitors should be encouraged to keep personal interaction with the person they are visiting to a minimum and remain socially distanced for as much of the visit as possible, numbers of visitors should be limited to the current guidance on group meetings to preserve social distancing as best as possible, and consideration given to staggering visits or other options for limiting simultaneous visits, if there is not a communal garden area, then visitors should visit the person in the individual’s own room and should be asked to wash their hands for at least 20 seconds on entering and leaving the accommodation. We are very pleased to be able to offer a range of online training, adapted from our regular training offering, covering a range of subjects. The DSA wants every adult who has Down’s syndrome to be able to keep themselves as safe as possible from coronavirus. Click here to download the factsheet on the image to the right. 1. The Government will reintroduce the specific advice for clinically extremely vulnerable people on how they can protect themselves at each tier.’. If so, they should have received a letter from the NHS confirming this. For those children and young people who remain at home, the Government document stipulates how support from the local authority should be provided. Please email info@downs-syndrome.org.uk. 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. Download the slides from our latest weekly update session (26 February) by clicking here. Sessions should adhere to the National Governing Bodies Return to Play guidelines for each particular sport. We will continue to advocate strongly for the unique and individual needs of every person who has Down’s syndrome. Dispose of tissues into a disposable rubbish bag and immediately wash hands with soap and water for at least 20 seconds or use hand sanitiser, if in shared accommodation, visitors should avoid (or minimise if avoidance is not possible) contact with other people who live there and staff (with face-to-face contact occurring for less than 15 minutes and at least 2 metres apart). Supported living managers, care/support workers, people being supported and their families and friends should follow national guidance on support bubbles and meeting others. You can find information about testing in Wales here and for Northern Ireland here. You can read the full announcement here: https://www.gov.uk/government/news/37-million-to-support-children-with-complex-needs. The Down's Syndrome Association is hosting a new fortnightly session, called 'Sharing Positive Support', that will offer the opportunity to share your experience around behaviour in children and… Lily’s festive lockdown venture 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. The Mission of the Down Syndrome Association of Pittsburgh is to enrich the lives of individuals with Down syndrome, their families and communities in which they live. It includes information about yesterday’s announcement of support for people who are self-employed. Chris completed the 100 mile Ride London cycling event an…, The Down's Syndrome Association is hosting a new fortnightly session, called 'Sharing Positive Support', that will offer the opportunity to share your experience around behaviour in children and…, Hi my name is Lily I am 18 years old. 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; There are new links to resources for learning, and a new page with ideas for fun and relaxing things to do. There will also be an announcement by the FCA concerning the extension of mortgage ‘holidays’ for those affected financially. Supporting young people and adults through times of change Visitors should take sensible precautions, such as covering the mouth and nose with a tissue when coughing or sneezing (followed by handwashing) or crook of the arm (not the hand) if no tissues are available. 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. 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. 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. NICE have now updated their COVID-19 rapid guideline: critical care in adults guidance. Here are the update slides from the last two Friday update sessions: 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. Therefore in these circumstances staff should minimise contact where possible, increase hand washing, clean surfaces more regularly and maintain existing routines use of PPE, There’s a great collection of ideas for sensory play from the. 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. 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). T21RS statement on ‘shielding’ or confinement of individuals with Down syndrome during the COVID-19 pandemic. Adults who have Down’s syndrome were added to this list in November 2020. The Association states its mission as being: to provide information and support for people with Down's syndrome… The decision to use visors, would need to be risk assessed for the benefit of the person, and would have to balance with additional risk of transmission. Down Syndrome Association Blog. https://www.gov.scot/publications/coronavirus-covid-19-stay-at-home-guidance/. The Government has announced extra funding for families on low incomes if their children have complex needs or disabilities. 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. Everything that the Down’s Syndrome Association stands for promotes equality of access for individuals who have Down’s syndrome. This is understandable, everyone’s’ prime motivation must be to keep our children and young people safe and well. https://gov.wales/alert-level-4-guide, You can find details of the current restrictions in Northern Ireland here: 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 government has announced that Working Tax Credits payments will be increased by £20 per week from 6 April 2020. 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. The dates have changed and the session will now be next Friday morning! They are called ‘Staying safe’, ‘Staying well and healthy’ and ‘Supporting me to make a decision: A Quick Guide’. The research demonstrates an increased risk based on the data that was analysed. We will also be issuing letters by email for those who have registered an email address with their GP practice. • people with lung cancer who are undergoing radical radiotherapy Governments in Wales and Northern Ireland have announced have indicated a different timeframe and we await further announcements in due course. If a practitioner, what is your professional role. Thank you to all the families and clinicians in the UK who have completed the online questionnaires. Yes, the advice to shield has been paused so you no longer need to avoid all shops. The survey will take about 10-20 minutes to complete. 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. However, many people’s daily lives and routines have recently been, or will be, disrupted. The LeDeR programme investigates the circumstances surrounding the death of someone with a learning disability. There is a flyer about this study here. If you’re not a member yet, click here or search The DSA Supporting Adults and Parents and Practitioners Group on Facebook. We have put together some suggestions together to help you to think about it. This will be updated as information becomes available. We are a member of the Canadian Down Syndrome Society, located in Sarnia, Ontario, Canada. 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. 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. 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. Toll-free in Canada: 1-800-883-5608 Local & International: +01-403-270-8500. It’s great to read about Sarah’s experience of recovering from covid-19. Suite 202, 1001 1st St SE Calgary, Alberta T2G 5G3. 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. As COVID-19 continues to impact our communities, DSALA is committed to doing what is best to support the efforts to help contain the spread. 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, https://www.gov.uk/government/publications/job-support-scheme. It is only through sharing the campaign that the great opportunity for positive change exists. The study has collated data from across the globe, with the majority of responses coming from Europe, including the UK. As we move down the priority list later this month, young people who have Down’s syndrome aged 16-18 will be included at priority 6. 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). Mission. 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. 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. The new national restrictions will come into force from Thursday and are set to be reviewed on 2 December. We have also produced a film where DSA ‘Our Voice’ member Sam explains what ‘clinically extremely vulnerable’ means. You can download the publication here or by clicking on the image on the right. We’ve just published the second document adapted from our forthcoming Emotional well-being series. The Down Syndrome Information Alliance provides support and resources to empower individuals with Down syndrome, their families, and our community. • people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors 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.’. Join the group to find out more. The initial draft vaccine priority list placed the CEV as sixth in line, behind anyone 65 and over. Full details can be found here. 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. Be part of our campaign to ensure that health professionals have accurate information.... Click here to learn more about our new resources and download for free. The half-hour session covers key issues relating to COVID-19 for people who have Down’s syndrome, their parents, carers and supporters. 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). Click here to read all the information or download the updated document. The Down's Syndrome Association is hosting a new fortnightly session, called 'Sharing Positive Support', that will offer the opportunity to share your experience around behaviour in children and…. 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. People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD. 4,097 talking about this. 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. ‘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. 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 delighted to announce that has now happened! The interim guidance, advised by the Joint Committee on Vaccination and Immunisation (JCVI), says the order of priority should be: 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. 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. Nowhere is this more important than in access to healthcare. In particular we would like to draw your attention to the following paragraph in the actual guidance. 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. 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. Last night’s Yoga session can be found on YouTube here. We will keep you updated with any replies we receive. The above should be achieved by building on relationships to advise people on infection prevention and control: You can download the slides from this morning’s weekly update session by clicking here. We really like this idea as it reminds us to look after ourselves. We have added some tips from our Information and Training team on developing language skills at mealtimes to the Learning at home page. Here are the update slides from today’s two update sessions: DSA update on Covid-19 and people who have Down’s syndrome, DSA update on Covid-19 and children under 16 who have Down’s syndrome. Where possible you should continue to work from home. statutory annual reviews. 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. 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. set out plans that will see the self-employed receive up to £2,500 per month in grants for at least 3 months. The minimum income floor for those claiming Universal Credit has been suspended for another 6 months. 19 March (Adults) You can download a copy of this easy read here. 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. It asks for: There is an option at the end to send a Clinician Survey to the doctor who cared for the person you support. 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. People who are in the clinically extremely vulnerable group are advised to be extra careful in protecting themselves. NORTHERN IRELAND: Guidance over the Christmas period in Northern Ireland can be found here. 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. 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. 5,225 talking about this. 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; This charity focuses on all aspects of living successfully with Down's Syndrome. 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. The information is available here: https://www.gov.uk/government/publications/guidance-for-full-opening-special-schools-and-other-specialist-settings, Covid-19 and Down’s syndrome T21RS Survey, report 27 May 2020. • people having immunotherapy or other continuing antibody treatments for cancer You can download the briefing document (pdf) here or read the information online here. 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. National Down Syndrome Society Telephone: 800-221-4602 (Monday-Friday, 9AM ET- 5PM ET) Fax: 646-870-9320 Email: [email protected] Headquarters 8 E 41st Street 8th Floor New York, NY 10017 . 2. PO Box 533462 Orlando, FL 32853-3462. info@dsfflorida.org . 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. This short document has been adapted from our forthcoming Emotional well-being series. 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. 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. ‘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’. You can find the stay at home guidance for Scotland can be found here on Gov.scot: It is open to all employers even if they have used the furlough scheme previously. So, thank you to all the … Down Syndrome SA in Action As the pre-emininent provider in South Australia, we provide the skills, education programs, social experiences & support networks to empower individuals with Down syndrome to succeed in a community which values their abilities and potential. 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. Dr Rhonda Faragher from the University of Queensland, Australia, has shared ten top tips for teaching your child with Down’s syndrome at home. ‘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.

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