Information for families


These are challenging times for us all – also and particularly for people with special needs and their families. It is precisely in times like these that such vulnerable groups must not be neglected, and that special attention must be paid to the impact of the crisis on their lives. This is the reason why we, an international collaboration of researchers from more than 14 countries, have joined forces to investigate how the coronavirus (COVID-19) pandemic and its political, social and economic repercussions are impacting on these individuals and their families. We aim to contribute to a better understanding of their experiences and influence the design of future interventions to improve their quality of life.

To this end, we have created an online questionnaire in more than 9 languages aimed at you, the families, the parents or caregivers of people with special needs (e.g. Autism Spectrum Disorder, Williams syndrome, Down syndrome, etc.) that can be filled out conveniently from home in about 30 minutes.

To participate, please choose your language on this page.

We are very grateful for your support. If you have any questions, please feel free to contact us via this e-mail address emotion@unidistance.ch


Download the Flyer in PDF


News


Autism Spectrum Australia: Experiences during the COVID-19 pandemic logo

1 November 2020 - Autism Spectrum Australia: Experiences during the COVID-19 pandemic

This project is part of an international study to identify the COVID-19 related anxiety and concerns of autistic children, children with special needs and their parents during the pandemic (April to July). We were also interested in the coping strategies used by children.

Read more on: Autism Spectrum Australia information in PDF



Newsletter n°16 from WGAS (Wissenschaftliche Gesellschat Autismus Spektrum) logo

1 September 2020 - Newsletter n°16 from WGAS (Wissenschaftliche Gesellschat Autismus Spektrum)

How are families of children with special needs doing during the CO- VID-19 pandemic? An international study Since the World Health Organization announced the COVID 19 pandemic in early March, the virus has left hardly any nation untouched. The situation had an enormous impact on the daily lives of many, especially when a country‘s government imposed a lockdown on its citizens. To examine the extent to which the lives of families with children with special needs - including families with genetic diseases, physical and mental disabilities, or developmental disorders such as autism spectrum disorders - have changed, three scientists - Prof. Andrea Samson (FernUni Switzerland & University of Fribourg), Dr. Daniel Dukes (FernUni Switzerland & University of Fribourg) and Dr. Jo van Herwegen (UCL London) - joined forces in March this year to create an online questionnaire (see www. specialneedscovid.org). …

Read more on:http://wgas-autismus.org/wp-content/uploads/2020/09/Newsletter_0920_bunt_final.pdf



The impact on families of children with Special Educational Needs and Disabilities in the UK logo

22 July 2020 - The impact on families of children with Special Educational Needs and Disabilities in the UK

Written evidence from an international collaboration between Dr Jo Van Herwegen (UCL, Institute of Education), Dr Olympia Palikara (University of Warwick), Prof Deborah Riby(Durham University), Dr Mary Hanley (Durham University), Dr Sinead Rhodes (University of Edinburgh), Aikaterini Giannadou (The University of Sheffield), Prof Andrea Samson (University of Fribourg & Swiss Distance University Institute), Dr Daniel Dukes (University of Fribourg & Swiss Distance University Institute & Swiss Center for Affective Sciences, University of Geneva).

The impact of the COVID-19 pandemic on the wellbeing of families is likely to be profound and affect those with special needs the most. This submission provides a summary of a recent survey (April-May 2020) in the UK that examined the impact of COVID-19 for families of children with special educational needs and disabilities (SEND) aged 0-18 years old with a focus on

  1. the impact of COVID19 around the safety of children with SEND, including howmany were hospitalised and directly affected by COVID19,
  2. the impact of school closures and support for children with SEND and their families,
  3. the immediate and long-term effects of increased anxiety, loss of support and effects of lockdown on both parents andchildren’s wellbeing, 3) lessons learned and concerns about the immediate future as well as future COVID19 events.

Read more on:https://committees.parliament.uk/writtenevidence/8883/pdf/



Autism researchers adapt studies for a socially distant world logo

30 April 2020 - Autism researchers adapt studies for a socially distant world

Article from Spectrum by Laura Dattaro

When the coronavirus pandemic first forced universities and labs to close, research teams raced to save their work and adjust to a socially distant world. Now, weeks into the crisis, many scientists are moving their investigations to virtual and online formats, a shift that may bring lasting changes to autism research. (…)

Read more on: https://www.spectrumnews.org/news/autism-researchers-adapt-studies-for-a-socially-distant-world/



Launch of the website! logo

16 April 2020 - Launch of the website!

Our website is online.



Resources

General

The organization Disability Rights Washington has issued a call to action: What can WE do to prevent disability-related discrimination in health care during the corona pandemic?
https://www.disabilityrightswa.org/2020/03/24/what-can-you-do-to-prevent-disability-related-discrimination-in-rationing-health-care/?link_id=0&can_id=e59f41b2ac72de95f3231103821d048e

This article presents a 5-step guide to a coronavirus parenting plan for parents of neurodiverse kids - with A for Acceptance, B for Balance, C for Calm, D for Daily Routines and E for Exercise.
https://www.psychologytoday.com/us/blog/targeted-parenting/202003/parenting-neurodiverse-kids-during-covid-19-5-step-guide

In this article, Frances Ryan from the Guardian, UK describes how a world that is increasingly becoming virtual, offers new possibilities to people with restricted mobility.
https://www.theguardian.com/world/2020/apr/20/covid-lockdown-opening-up-world-for-people-with-disabilities

The charity Unique, specialized on rare chromosome and gene disorders, uses this page to gather helpful content. A guide for family life in the time of self-isolation and other info sheets on various questions, like what to do when you are worried about letting carers into your home, can be downloaded.
https://www.rarechromo.org/covid19update

COVID-19 Guided Self-help Booklet Series: The University of Glasgow ,with assistance from colleagues at Lancaster University and the University of Warwick, have published a series of guided self-help booklets developed to support people with mild to moderate learning/intellectual disabilities during the COVID-19 outbreak.
https://www.scld.org.uk/covid-19-guided-self-help-booklet-series/

Helping parents manage challenging behaviour during the COVID19 lockdown – Some pointers for practitioners ACAMH:
https://www.acamh.org/blog/helping-parents-manage-challenging-behaviour-during-the-covid19-lockdown-some-pointers-for-practitioners/

Autism Spectrum Disorder

Coronavirus tool kit may aid families with autistic children during lockdown:
https://www.spectrumnews.org/opinion/viewpoint/coronavirus-tool-kit-may-aid-families-with-autistic-children-during-lockdown/

The British National Autism Association focusses on handy tools and tips for caregivers to help inform children on the spectrum and practice sanitary behavior with them.
https://nationalautismassociation.org/covid-19-resources-for-families/

ASERT, a “partnership of medical centers, centers of autism research and services, universities” etc. has created a health and safety guide in video form. There you will also find translations of the information into Spanish, Chinese, Russian and Arabic.
https://paautism.org/resource/coronavirus-resources/

Toolbox with advices to parents of ASD children during the COVID-19 lockdown - Hôpital Debré, France (in English):
https://www.debrechildpsychiatry.org/toolbox

William Syndrome Research

Durham University is the home of the North East Williams Syndrome Research Group
https://www.dur.ac.uk/devdis/ws/

Doing schoolwork @ Home? The WSA has assembled these resources to support students and caregivers who are working on schoolwork and other skills at home.
https://sites.google.com/williams-syndrome.org/wsa-education-resources/home

Down Syndrome Research

COVID-19 - The Matthew Foundation - Down syndrome research, inclusion, and employment. Information and resources availbale at this link:
https://www.thematthewfoundation.org/covid-19.html

Australia

For information on the coronavirus disease (COVID-19), call the Australian Government's National Coronavirus Helpline on 1800 020 080.

Autism Spectrum Australia has created a facebook group, which will allow people from the autism community to support each other during the COVID19 crisis through the sharing of information and tips to help with anxiety and social isolation.
https://www.facebook.com/groups/COVID19AutisticCommunity/

Association for Children with a Disability has put together information to help parents of children with a disability and their families find the support they need during COVID-19.
https://www.acd.org.au/covid-19-latest-information/

Raising Children Network has created tips on physical distancing and supporting learning for students with disability while staying at home.
https://raisingchildren.net.au/guides/coronavirus-covid-19-guide/coronavirus-physical-distancing-disability

This is the website for the Fragile X Association in Australia:
https://www.fragilex.org.au/

Testimonials


Mother of a daughter with severe multiple disabilities

23 April 2020

Germany

Families of children/young people and adults with severe disabilities are forgotten in the whole pandemic discussion. Schools and kindergartens are closed, short term, holiday programs, hospices - everything closed - all support falls away. That is the biggest problem. Even before Corona, families with special needs were already living in social isolation…

Other Covid-19 Studies


Help colleagues to understand how COVID-19 affects social trust and mental health globally for people aged 18 and up (without special needs) at www.GlobalCovidStudy.com (20-30 minute survey).

Michigan State University: The purpose of the study is to assess the different experiences of COVID-19 encountered by persons with and without disabilities in different countries.https://tinyurl.com/MSU-COVID