Practical, Financial and Other Information & Support

Last updated 26th March 2020

We will update this page with any information we have about organisations that are helping local communities; Government advice and articles we spot that may be helpful about benefits and worries about pay; health and social care; other, more general, sources of information and support.

Practical Support

  • Getting Essential Supplies: we’re aware that some people in the Community are finding it very hard to set up practical help. Those who are ‘extremely vulnerable’ can register for help via the Government website. Clinicians, Patient Groups and politicians have strongly advised NHS England of the need to ensure people with neuromuscular conditions are regarded as ‘extremely vulnerable’ so that they can access additional support - but have not yet heard back. We suggest you may anyway try to register as such via the online form here. When you get to the page entitled, "Do you have a medical condition that makes you extremely vulnerable to coronavirus?", try ticking point three from the bottom that starts, "have a rare disease...".
     
  • Many supermarkets are also trying to help - please check their websites for further information.
     
  • Covid Mutual Aid UK is a group of volunteers supporting local community groups organising mutual aid throughout the covid-19 outbreak in the UK. Information about this new organisation is here. Click on the tab at the top to find your local group.
     
  • Free School Meals: Children eligible for free school meals will be offered meals or vouchers as an alternative if they can no longer attend school due to coronavirus measures. Further information from the Government around this is here.

Benefits, Pay and Employment

  • The DWP has announced that PIP and ESA reviews and reassessments are suspended for the next three months. Disability Rights UK has information here.

  • If you are working away from home, and you or someone you live with, has symptoms of coronavirus, you can get an isolation note to send to your employer as proof you need to stay off work - you don’t need to get a note from a GP. Get an isolation note here.
     
  • Turn2Us is a national charity providing practical help to people who are struggling financially. They have published some guidance around benefits and financial support if you're affected by the coronavirus.
     
  • This summary article from the Guardian about sick pay and lost hours may be helpful
     
  • Citizens Advice have general information here, including around help with paying bills and rent.
     
  • MDUK Advice on Statutory Sick Pay: Their helpline can provide advice about Statutory Sick Pay and obtaining a sick note if you are unable to work from home. It is advisable to speak to your employer first, in light of Government advice that people should work from home where possible, and many employers will be making their own arrangements to support their workforce to do this.
     
  • MoneySavingExpert have information and advice on many of the financial measures being put in place.
     
  • Government advice with links to specific information about finances, employment etc can be found through this link. Scroll down to see the topics, here.
     
  • Friends Against Scams is a National Trading Standards Scams Team initiative, which has information and advice on recognising and avoiding scams.
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  • Disability Benefits Consortium have written an open letter to the DWP, calling for protection from further physical and financial harm during the Covid-19 emergency.

Local Authorities

Children

The Government introduced new legislation (19th March) in response to the outbreak. Advice for anyone who has SMA and has an Education Health Care Plan (EHCP) is that all people in the household of someone with a neuromuscular condition should avoid nursery, school and college, even in cases where they have an EHC Plan in place. Please see this page for more information.

Parents who consent to changes to, or reductions in, their child’s provision during this outbreak will not be considered to have agreed a permanent change to what their child needs in their EHC plan.

Meeting Health and Social Care Needs

Local authorities will need to work with their health and social care partners to ensure individuals’ needs can continue to be met safely. This is particularly important for children with complex medical and clinical nursing needs, and children in care who have special educational needs and disabilities.

There’s a helpline for parents if they have any questions – call the Department of Education Coronavirus helpline information for the latest Government advice – 0800 046 8687 – (Mon–Fri: 8am – 6pm, and Sat–Sunday: 10am- 4pm).

Adults

Adult Social Care (ASC)

The new Emergency Coronavirus Bill (24th March 2020) suspended the duties in the Care Act, meaning that there will be no new assessments, care plans or reviews at this time. Your Personal Budget should continue.

Many people and disability charities have expressed concerns about the long term implications, as this BBC news clip illustrates.  

Disability charities are working to get more clarity and reassurance. MDUK have responded here.

Other Sources of Information and Support

  • SMA UK - although we don't have more specific information about the coronavirus than what is already on this page, our team is here to support you and talk things through; you can find out more here. The SMA Community have been putting together their top tips and ideas for keeping entertained and positive if you're having to socially-distance or isolate. You can also link with others in the SMA Community and ask questions, read more on this page.
     
  • TfSL charity help to support seriously ill children.  Their helpline is available for parents / carers of a baby, child or young person who has complex health needs and who has practical concerns. They also have responses to practical Frequently Asked Questions for families / carers. See here for contact details and a link to FAQs.
     
  • Contact for Families With Disabled Children have published some information which you might find helpful, including around children's education and welfare benefits and money. Read more.
     
  • Muscular Dystrophy UK are introducing a regular Q&A session on Facebook. Starting on Wednesday 1st April from 1-2pm, it’ll take place every Wednesday for the next few weeks. Their team will find it helpful if you can send in your questions ahead of time, to make sure they can help as many of you as possible during the hour.