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We want to hear from you: please tell us about your experience of the online community.

How has coronavirus impacted life for you and your children?

Adrian_Scope

A group of MPs, the House of Commons Education Select Committee, is looking into how Coronavirus has impacted children and their education. After carrying out their research, they will be using their findings to recommend ways that the Government can help address these problems.

We’re keen to hear how life has changed for you and your family as a result of the coronavirus outbreak. Scope is a member of the Disabled Children's Partnership, which is a coalition of charities and parent/carers, and we'll be using what you tell us to help the Partnership submit evidence to the Committee.

To get you started, here a few questions we’re interested in hearing your answers to:

If your child goes to school:
How have school closures affected your child’s education and wellbeing?
Have school closures made it more difficult to look after your child?
Has Coronavirus affected the children’s services you normally get support from? Have you been able to carry on using them?
Can you briefly tell us about some of the other challenges have you faced as a result of Coronavirus? Maybe around the emotional impact, the financial impact or getting food?
If you had to pick one, what is the biggest issue you are now facing as a result of Coronavirus?

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Comments

Roddy

I am separated from my 2 'adult' children one of whom has special needs and is within the exceptionally vulnerable category. My daughter is his currently his career due to my own illnesses & disabilities which resulted with me not being able to care for his needs.

'She' is particularly worried, scarred and frightened of contracting COVID-19 whilst also having the same concerns about myself, and those of her very vulnerable brother at this time. She has not been able to rely or depend upon food being delivered, or neither have I, which puts additional burden on her, as she has no alternative but to venture outside WITH her brother as he cannot be left alone unaided.

My children also live some 200+ miles away from me, which in any normal instances is challenging for us all. I can accept that the logistics behind catering for everyone is an almost impossible task at this time, however the so-called 'promises' that have been made or have been suggested are in place for the careers of disabled people are not evident in the case my family.

Seanchai

Hi Roddy ....So sorry to read that you and you family are struggling with the lockdown . I know that in Scotland the local council are in touch with people isolating and a box of free food is available if required . Luckily we have family around us who leave provisions at our front door for us, so we do not need to use the free box of food every week . Maybe you could get in touch with your local council to see if it,s them that are sorting food boxesout for the communities .
Good luck Roddy ...and family ? God Bless you and yours ??

Roddy

Seanchai said:

Hi Roddy ....So sorry to read that you and you family are struggling with the lockdown . I know that in Scotland the local council are in touch with people isolating and a box of free food is available if required . Luckily we have family around us who leave provisions at our front door for us, so we do not need to use the free box of food every week . Maybe you could get in touch with your local council to see if it,s them that are sorting food boxesout for the communities .
Good luck Roddy ...and family ? God Bless you and yours ??

Thank You @Seanchai, and I'm pleased that you're keeping safe & well.

I'll pass-on your info to my daughter. I must add that my local community have been very helpful in terms of my own situation, and the villagers have been very enterprising, from cooking meals for those that need them, collecting & delivering groceries for folks like myself, and even producing face-masks for the community as it's a very small & remote village which is very quiet even under normal conditions. It does still seem though, that many of the online services which we have been told to contact, just cannot cope or manage, and as such they are either impossible to make contact with or are simply stating that they are too busy... I spent 55 minutes trying to book a food delivery, even though I have an existing account, only then to be told to try again later. I'm sure that I'm not alone with this, and that we who have been told to remain completely isolated for 12+ weeks minimum, things are becoming more & more desperate as each day passes.

Seanchai

Yep Roddy ....you must be very worried indeed. I also stay in a small village and our neighbours are really good , if we need any thing at all....but we are lucky to have family close by . Have you contacted www.gov.uk/coronavirus-extremely-vulnerable
you can register yourself and register for anyone else who needs the help ...I,m pretty sure you ( and your family) are the very people this weekly food parcel is meant to help .Please let us know if you can register ( and your family ) ....
Good luck and God bless ??

kiwi_1706

I'm not sure I know where to start. I care for my disabled husband, and two disabled children. I won't go into detail about our situation, but suffice to say it is complicated, and I feel, and my husband feels, that we have been pretty much abandoned by health and social care services. We have no social support network whatsoever.

My children have missed out on huge chunks of their education while teachers dismiss their difficulties, and/or just adjust their expectations of them downwards rather than try to source non-existent support. My daughter is due to sit her GCSE's next year... the work being sent home is undifferentiated, takes no account of her difficulties, and all the teachers realistically can say is that she should try her best (no implied criticism of the teachers here - what else could we expect them to do at this moment in time?)... she was just about holding her own academically before this crisis. Observing how she is struggling to keep up at the moment, I think it is extremely unlikely that she will pass a single GCSE next year.

My 12yo was refusing to go to school before this crisis started, because very little of the support detailed in his EHCP was being provided. This crisis has been a relief to him because now there is no pressure, no expectation that he will go to school. Having had to home school him for the past few weeks, I am struggling to understand why he hasn't made more progress in school - with the right support he can clearly do very well. I don't think it would be appropriate to send him back to school and he definitely doesn't want to go. (Perhaps it is worth mentioning here that my husband had very similar educational needs more than 35 years ago, which were well supported - a stark contrast for us, compared with what little education our children have been able to access).

They were both extremely isolated before this pandemic. They are even more isolated now. They are both having periods of very low mood, are tearful, anxious, and jealous of friends online who have gardens, trampolines, and swimming pools. We are unable to provide most of my autistic son's sensory diet, we don't have the space for indoor workouts, etc. We don't have enough water (no mains), fuel for electricity, food supplies, etc. We can't even set foot on our doorstep because of the enormous number of people walking/cycling outside. My husband has a social worker, my children have a social worker, my husband has a housing support officer... none of these people have been able to advise on how we can access essential supplies without putting my husband at even higher risk (he is "extremely vulnerable" according to his GP, but still no letter!), so he is still collecting water and essentials once a week.

We are still getting direct payments to try to reduce the kids isolation... but we can't access those activities. I haven't done anything about that yet.

Firefly123

I am disabled and extremely vulnerable have 3 young adults with autism and other complex mental health issues. I'm finding it extremely difficult having all at home 24/7 my sons college has been great calling every few days checking he is OK and asking if we have enough food. My daughter college have not answered any emails as I told them she does not use a computer and they were ment to email me her work so I could print it out. So no help from them at all. The cost of food and electricity is so much higher as having to buy what's left we are 5 people and can only get two of things which is also adding to the stress. My boys will only leave the house if I take them as can't leave on their own. I have to say I'm really worried about all their mental health. As well as my own. It feels like I'm waiting for an almighty explosion.

Abs_Scope

@kiwi_1706 - reading through your experience I felt I just wanted to reach out and thank you, first, for being so open and honest with your response. You mentioned you have no social support network whatsoever, and I just wanted to reassure you that people in this community really do care about each other. Reading through your post made me feel like I know you and really hope for you and your family. You have a lot of specific challenges to face - I am sure each of the specific board here can offer some advice or at least, understanding.

Abs_Scope

@firefly123 - sorry to hear about the challenges you are facing. This whole situation is creating some very specific challenges for people - thanks for sharing so we can all understand what our community members are experiencing. Sharing on here can be a powerful source of encouragement. Also, be assured that there are places you can look for a listening ear, like Samaritans- 116 123, Mind - 0300 123 3393. I can't offer specific advice, but know that we are all thinking about you. Feel free to post in the Coffee Lounge or other boards when you feel you need help or just some interaction.

Firefly123

Thank you @Abdi_Scope

Topkitten

Actually I am getting fed up with something I doubt most would be bothered over. I am getting disconnected from the internet at least 6 times a day, usually at what would have been busy times. I have tried contacting the supplier but, guess what, ALL of their support centers are closed! I wouldn't mind so much except that I see constant advertising on TV about their FAST service. I refer ofc to Virgin whose servers are obviously vastly overloaded and keep requiring resets. This has been going on since just before the mandatory isolation started and is very frustrating especially when you consider that my TV is also getting interrupted. Being housebound I have nothing except for using the internet or watching TV to do and the overload is almost certainly because of all the streaming and video calls that are going on for people that cannot cope with being stuck indoors for a few weeks unlike the 2 years of my enforced incarceration. Even when the connection is , so called "working" I get graphical glitches and artifacts making even watching TV no fun whatsoever. However, I bet anything you like that all these people massively overusing the systems even bother to notice how badly it can affect those of us with no choice whatsoever! As I never know when the overload or reset is going to occur I am extremely dubious about going through ANY ordering process in case it gets interrupted and I either get charged twice or the order never gets processed.

TK

feir

I'm a lot happier. I'm not the only housebound person round here any more lol.

I love how it's a lot quieter now everyone has to stay in and how the streets aren't covered in rubbish like they usually were. And i love how the under appreciated and underpaid are finally getting some recognition as being valuable members of society. Oh and i feel slight amusement that everything this government tried to do has had to be undone (things like banning the covering of faces in public, cutting benefits, and slagging off the underpaid as low skilled workers (now they get clapped for every thursday night)), seeing as MPs just got a 10,000 expenses bonus they probably don't care.

I have a son with a learning disability and he has never been hard work but does get depression, i've seen that lift now he can sleep when he wants and has his siblings here with him. He had a lot of support from his school but since he went to college all that stopped pretty much and we never had support from anyone outside of school just interference from SS which usually left us worse off in the long run.

I'm a bit worried that my daughter is going to get exam results based on her not even doing her exams.,she's really intelligent though so hopefully she goes to college and gets proper results from there.

And that my youngest son is supposed to be doing online college work but he hasn't got a laptop or anything other than a mobile phone, we won't be getting food vouchers for him either. He actually stopped going to college about 2 weeks before the lockdown as he was scared of catching the corona virus, it was constantly shoved in his face on social medias and i had to tell him to block news sites so he didn't keep seeing things about it.

My kids are missing their friends but not the course work or anything like that and loving the time at home, i'm teaching them important skills while they'rehere all the timeand not tired. I get that the government can't do anything about their friends though.

Only thing is i need more help from services for my disability, like a referral to incontince services to help me and my son choose what would be best to use and to get them free off the NHS. I did need a lot of appointments before my discectomy too but had to put that on hold obviously.

Also UC claim,and new style ESA...i need an initial fit note even though i've recently been awarded PIP until april next year and my condition is degenerative (so won't just get better). Can't get an appointment at my GP for one,same for my son as he has turned 20. Also i was supposed to have a phone appointment yesterday but nobody called me and i look in my journal for UC this morning and it says i had the appointment and they might need proof of my identity (again?!) and my bank details...which i can't do online as i already tried that last month but had to go into the jobcentre to do it. Nobody called me, dunno if they just pretend you had the appointment as there's too many people claiming or ill? Wish they'd explain what is going on there. I daren't mention i didn't have the appointment in case it delays my claim or ends it or even sanction me now that new style ESA or UC allow this.

Seanchai

yes indeed feir ...it has hit everybody badly ...but it does highlight ( as you say ) the people who we " need " in society ....and they are far apart from the " greed" of some others .
We saw the panic buying and that was all about " me ,me ,me " ...I had to laugh today when I read about a man who had stacked many hundreds ( thousands) of toilet rolls and 150 hand gels , He was banned off e- bay for trying to make vast profits .....He took them all back to the store and wanted to " return" them and get his money back . The store manager/ owner , told him to stick them in his cupboard as he was not getti g any " returns" to his store. ?
Serves him right . I hope we are all taking names and sites down in a notebook ....the ones who were selling items, at 1000% profit ...we must remember them and play them back at their own game .
We had umpteen problems with UC as well Feir...I have been on DLA for more than ten years with a lifetime award . Of Course everything has changed now as my wife went onto her state pension ( five and a half years later than she should have ) I had to apply for PIP and we both had to apply for UC . This was all done in plenty of time but the DWP overpaid my wife carers allowance by a week ( her carers stopped due to he being state pension age but they overpaid her by a week and stopped our money for a month due to overpayment . The UC had to come out to my house to see I was who I said I was , I had to supply passport, bills ect linked to this address( we have been in this house for over 30 years ) ? . The gentleman said we would need to fill out a journal ( I am now on Pip and my wife is now retired ...of course her carers work never changed ...just her carers allowance was stopped ). We asked the gentleman why we would need to sign an online journal and how often we need to sign into the journal ? Oh , in your case maybe twice or three times a week would suffice , to see ee you are both still looking for work and proof to say you are looking for work . I said my wife is not looking for work as she is now retired and I am on PIP for ten years ....( oh , he said , you both should maybe claim pension credit )... but that was not possible as my wife is six months older than me and i do not officially become retired until next January......I could go on and on ...I know exactly what you had others are going through , the CAB , the local employment office and the DWP and UC ( on the phone) were telling us conflicting advice .....if not for 'Poppy123456 ' on this site I believe it would still not be fixed out .
all the best my friend ...good luck for the future ?

OTEmily123

Hello! My name is Emily Handley and I am an occupational therapy doctoral student at MGH Institute of Health Professions in Boston, MA. I am performing a research study about stress and self-compassion during COVID-19, specifically for caregivers of children with chronic conditions. I am looking for caregivers who have a child and/or children (up to age 22) with a chronic health condition to participate in our study.

To healthcare professionals and students, we encourage you to forward this link to any caregivers who you think may be interested in participating.

Completing the online survey will take approximately 10-15 minutes. The survey is anonymous and responses cannot be linked to you. If you are interested in learning more about the study, please click the following link:

https://redcap.partners.org/redcap/surveys/?s=FD9YC7LFH4

If you have any questions, you may email me at eehandley@mghihp.edu or my advisor Emily Zeman Eddy at eeddy@mghihp.edu.

Thank you for your time and consideration.

Hannah_Dobbin

Hi all, I work in the policy team at Scope leading on our work around children and young people. Thanks for sharing your experiences. I just wanted to let you know that the Disabled Children's Partnership, a coalition that Scope is part of, has now published findings of a survey of over 4,000 parents about their experiences of lockdown. It's also asking people to share their stories on social media using #LeftInLockdown and tagging your MP in. You can find out more here:
https://disabledchildrenspartnership.org.uk/left-in-lockdown/

Thanks
Hannah