February 09, 2021

Adam Boniface Scott

My name is Adam Boniface Scott. I've written a speech of my views on what's happening right now regarding the pandemic and disabilities. I have autism and mild learning difficulties.

People with learning disabilities have been forgotten about and been treated horrifying badly during the pandemic and even before that. From people not being listened to to people who need help but for the sake of a money bonus they are being refused.

Not being recognised on the covid 19 vaccine list as vulnerable to even a hospital prioritising if someone should live or die of covid based if they had a disability or not.

Carers who aren't trained properly in certain disabilities who are instead of trying to understand are blinded by ignorance and closed mindedness to the possibility that people with disabilities non verbal or very talkative has still got a voice. Non verbal doesn't mean they can't communicate but means they have their own way of communication and it's the ignorance of people not willing to learn that personal individuals personal way of communication.

There’s still people with disabilities in care homes being treated like prisoners in a holding cell unable to live a long healthy life with support helping them to enjoy but also support them in their daily lives.

Cuts to social care during a Pandemic especially is very much a sign of discrimination against disabilities when actually it's already underfunded.

Pip assessments are assessed by people who don't have any information or knowledge of disabilities and hence why many people with a disability is losing out on money they need to help with support needs.

Direct payments needs be accessible to all them who need support in the care sector even if it’s for respite and social workers need the right training to help support people in the care system with disabilities and adults services.

These reasons are why we without a doubt need a massive reform in our care system because people with disabilities deserve to be as happy and healthy as anybody else. It's our human rights at the end of the day.

I heard about the Coronavirus and people with learning disabilities study because of Disability Sheffield. This is their website: https://www.disabilitysheffield.org.uk/


January 12, 2021

Finlay’s Diary – reflections from Nina Evans

From 30th March to 3rd July 2020, with the support of his family Finlay kept a daily diary to record his day to day experiences during the first lockdown. The family experimented with the diary format, including a picture diary and some times when everyone in the family recorded three good things and one bad thing about the day. In this blog Nina, Finlay’s mum, offers some reflections on the time they kept the diary and beyond, with some excerpts from the diary. This blog is published with the approval of Finlay and his family.

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Reflections:

I think I started the diary to help me cope with the prospect of lockdown. I faced a long period of time caring for Finlay with no college or clubs to go to and no prospect of meeting up with friends or having respite breaks. I felt the need to structure the time, to break it down and make it seem more manageable.

Another aim was to create a routine way of finding out how Finlay was doing; what he was interested in and enjoying and what (if anything) was worrying him. I felt this was important as Finlay has always found it hard to express his more negative feelings and it was a worrying and strange time for everyone. This turned out to be a bit of an own goal because I feature quite highly in his entries about the things he wasn't happy with! But he was upset about small stuff and wasn't worried about the pandemic or bigger issues which was reassuring.

The diary also evolved over time. We did a photo week for something different and weeks where we'd all record things we were happy and unhappy about. This was a great way of communicating how we were all doing and of keeping in touch with our son Tom who had moved out at the start of lock down.

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My thoughts having re-read the diary are perhaps rose tinted as we got through that time unscathed.

Lockdown 1 - when we were all at home, only going out once a day to exercise, seems like a simpler time. The ability to follow a set routine and having time to do things slowly really suited Finlay. As the year has progressed and Finlay's college has opened and my work has opened, life has got busier and more complicated. Finlay loves being back at college but has really struggled when his routine has changed often at short notice. There have been 2 occasions where Finlay has had to have a COVID test and stay home until he got the result and he has struggled with this. Recently I have had to self-isolate and I haven't been able to take and collect Finlay from college or take him out at the weekend like I normally would. Finlay has found this really difficult too. At least with Lockdown 1 we knew where we were. Now we have Lockdown 2 and tier 3 restrictions but we are trying to keep schools and colleges going. This has meant lots of changes in routines for Finlay with little warning. Things like this are hard for him to understand and to cope with.

Diary excerpt 15 May a Finlay Diary 15May b

In the diary I can really see that Finlay loves birds and animals and trains. I can see that he enjoys the contact he has with people who weren't living here with us; virtual sessions with his Pathways college course, virtual sessions on the MENCAP Employ Me course that we did and contact from his older brother Tom and his girlfriend Jasmine. I remember that Finlay and I enjoyed spending time together and it has made me reflect that in the future I want to make sure I have time to do things with Finlay. I would like to find more of a balance where I spend less time ferrying him to and from places to do things with other people. We both enjoyed the slower pace of life.

I can see the technology stresses that we had. Learning to use Google Classroom and Google Meets and the struggles that we had when it didn't work. I'm not sure who coped worse with this - me or Finlay! I can see the family tensions in the diary. All of us living and some of us working under one roof for a long period of time - not knowing when nor how it would end. That was difficult at times.

The last thing that stands out to me are the tensions caused when I had to balance looking after Finlay's needs with other demands and my own needs. My Mum and Dad struggled in lockdown and it was hard to support them when Finlay was always with me. I also notice the lack of respite services both then and still now. Finlay normally accesses 3 services for respite and none of them are properly back up and running at this time - for good reason - so we have had very few breaks. I have found this hard especially as the pace of life has picked up. Finlay was really used to going out with other carers and was just getting more confident at his overnight respite and all that progress has been lost and will have to be rebuilt again when the time comes.

Diary excerpts 19th may Diary excerpt 16th June

December 15, 2020

The Effects of Coronavirus on Our Family – By Penny

Update on the effects of Coronavirus. Second Letter written by Mum, Penny - November 2020.

We knew things were difficult in September but October was to be much more difficult! To us the daughter we know and love has not been there for several months and October seemed the worst!

She spent most of her time in her room, just coming out for meals then rushing back. If we went to ask her to come out or just try to talk to her she would say “go away” and shut the door on us. This might sound normal but it is not for our daughter! She spent most of the time staring at the wall, she didn’t seem to have the energy or will to do anything, again this is not like her. Sleeping seems to be something that she doesn’t need to do at the moment!

Looking at photos that we have taken over the last months she looks unhappy in her eyes even if she is smiling! We have tried all sorts of activities and all the things she used to enjoy to no avail, the sadness is deep seated within her and she has become very difficult to reach. Then the day before the second lockdown she slowly started to come back it was as if her mind was slowly being unlocked. Over several days, she started to talk to us and best of all started to smile and laugh again, very slowly, then she seemed to be her “normal” self. For a whole day she did the things she has always done at home, paint, colour, look at her books, watch videos and listen to her CDs. She has always multi tasked, i.e. colour in a picture whilst watching a DVD and listening to a CD. She has always been happiest when doing 2 or 3 things at once.

To see her smile and her joy of life return was wonderful. Sadly it was short lived the following day she started to return to the sad person she has become! It has got to the stage now that she is not just mentally sad but she is becoming physically “sad”, if that is possible!

With the second lockdown she is still able to go to day services, for the moment, even they have noticed a change in her behaviour, a slowing down of her body and mind.

Obviously if things change or a local outbreak occurs then day services would have to stop, I really don’t know how she would cope with being completely shut in again.

Ever since March, the first lockdown, we have taken our daughter out for a walk every morning. We have constantly tried to occupy her and engage with her but she needs and misses the other people that she used to see and do activities with, we can’t fill that void!

It will take months, probably years for her mental state to recover, if ever. She has almost been in a catatonic state, like a period of deep mourning, for the life she used to have! Recovery, when it does come, will be long and slow because her life is far from back to normal, as with everyone.

This will be something that will haunt her for the rest of her life!

Note: All names and identifying information have been changed in this blogpost


The Effects of Coronavirus on Our Family – By Penny


Letter written by Mum, Penny, September 2020.

This is a personal account of the effects coronavirus and lockdown have had on my daughter, she has severe learning disabilities. I am sure she is not the only one experiencing the type of overwhelming difficulties this has caused her.

Previously she has always been very busy. She used to attend 3 day services on 4 days of the week. Doing a lot of different things, swimming, badminton, arts & crafts and many other varied activities. In the evenings she used to go to an acting group on a Monday night, Guides that she has been going to for 34 years on a Tuesday night and another club every other Thursday. On the days she was home (weekends & Wednesday) we have always gone out and visited local places of interest with her. Liz has always been used to a lot of activities and plenty of social interaction.

Liz coped for the first couple of months of lockdown then a few things started to develop. For example we had a week of sleepless nights where she was only sleeping for 2 hours a night (both she and I were exhausted by the end of that), also she has had mood swings that are more than usual in that she can become very angry over something that is of no consequence and would normally not affect her. 

From the beginning of August life has become even more difficult for Liz. She has had some hair loss and her emotions have been up and down, she bursts into tears for no apparent reason and sobs and sobs as if she is in pain. She also stares vacantly at the carpet or the walls or into space. She doesn’t stay focused on anything for any length of time. She has started to say she is “Sad”, something she never used to be! She has always had a very happy outgoing personality. She loves mixing with and talking to other people and she thinks everyone is her friend so being “shut up” and not being able to see and talk to others is very difficult for her.

It is very difficult to witness her decline. She has never acted this way before!

She has been involved in Zooms with her day services but a Zoom cannot replace face to face connections. She has told us that she doesn’t want to do the Zooms any more with 2 of her day services so she only does the Zoom with one day service. When the Zooms first started she was interested and would sit and smile at the screen but as time has gone on she has stopped engaging with the screen and looks down instead of into the screen. She also has Facetime with her Nan, who she has always been very close to but she finds it more difficult to focus on the screen now and will look away most of the time we are talking to her Nan. She hasn’t been able to see her Nan in person since the end of March, this has been bad for both of them.

I contacted the LD healthcare team with regard to the changes Liz has been going through and was advised to ask our GP to carry out her Annual Health Review. I contacted the GP and they said she should have blood tests. I took her for blood tests and the GP phoned to say they had all come back as normal so she has no physical reasons for the above symptoms. She then advised that I should phone the LD healthcare team and ask for counselling for Liz as she felt the problems are more related to stress/depression and she felt counselling might help. I contacted the LD healthcare team again and they did a phone assessment and said they would take it to panel. The nurse told me she felt the problems are related to lockdown etc. and when it all ends Liz will be okay! Can we wait that long?

What she needs is for things to get back to normal. I know that is not going to happen but she doesn’t!

She went back to day services one day a week at the end of September but found it almost overwhelming and confusing at the same time. She went in really happy and I think she had a really good time seeing people and being able to chat but she came out very quietly and didn’t want to talk to us. It took a while through the evening for her to return to ‘normal’. I think the experience of going back was a lot different in reality to what Liz had imagined. She had watched the video and we had talked to her about the changes that would be in place but I think the reality was different. We are hoping that she will settle in and accept the changes over the coming weeks.

One 5 hour session a week is not enough for her to cope with life as it is now.

I know others will not be going through exactly the same as us. Most carers will be finding life very different and possibly difficult as a result of coronavirus and be in desperate need of help and support by now. Who to go to and how to get that help is a big problem as the person you want to talk about is always in the room with you!


Note: All names and identifying information have been changed in this blogpost


November 18, 2020

COVID–19 Key Issues for families of people with learning disabilities – Blog 1


Living through the coronavirus pandemic – what are the urgent issues for families of people with learning disabilities with greater support needs in November 2020?

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As part of our project [see more here www.covid19learningdisabilities.co.uk] we are finding out about the urgent issues for people with learning disabilities and families of people with greater needs as the coronavirus pandemic continues, so we can make sure our surveys reflect what matters to people over time.

These are the most important and urgent messages we heard about families caring for people with learning disabilities with greater support needs through the coronavirus pandemic as a second wave of lockdowns were beginning to hit across different parts of the UK. The issues families talk about are very similar across Scotland, Wales, Northern Ireland and England, and the issues we picked up are very similar to those reported across a range of sources (see our brief summary report www.covid19learningdisabilities.co.uk/results for a list of these sources).

Urgent issues for families are changes in support, health concerns, lack of access to family members in residential care/hospital, lack of information, experience of using digital platforms, impact on the family carer and impact of restrictions.

Changes in support. Reductions or removal of support during the coronavirus pandemic is a major issue for families. Changes to support include the removal of care packages, including home care, day centres and day activities, respite services, and reduced or no contact from community learning disability teams and other professionals. Some people are continuing to be charged for services and supports that have stopped. Face to face support has often been replaced by reduced levels of contact by phone. Direct payments have for some people been suspended or stopped, with no clarity about when they might be restored.

Assessments have also been delayed or their format changed in ways that people don’t always find helpful.

Some families are worried that local authorities may try to justify not restoring care using the rationale that families have been ‘coping’ during the pandemic. As support has been reduced or withdrawn, the caring responsibilities of families have increased, with an impact on their physical and mental health. For some families, the withdrawal of support to care for their relative at home meant that they were unable to sustain their care responsibilities and their relative has had to move into residential care.

Families across the UK are worried that emergency measures introduced to speed up decision-making during the pandemic have given rise to the return of paternalist practices. These include corporate parenting practices focusing on protection, and not involving families in emergency planning and risk assessments that should take account of the whole family’s mental health and wellbeing.

Family carers of people with greater needs, particularly people with profound and multiple learning disabilities (PMLD), have to interact with multiple agencies. Current pressures across services, including slow communication between them, are having a cumulative impact on the whole family including the person they care for.

Taken together, these issues mean that family carers can feel abandoned by services and professionals.

Health concerns. Families of people with learning disabilities and greater support needs are worried about the risk of COVID-19 infection to both themselves and their relative, and also worried that the health and wellbeing of their relative is deteriorating because they cannot get out to their usual activities. Some family carers are worried about going out with their relative because of other people’s behaviour increasing the risk of infection.

Families are worried about being able to get the healthcare they need for their relative, including GP appointments, routine hospital appointments, and getting prescribed medication. Changes to how healthcare is delivered, such as the increasing use of remote consultations, is a particular concern of family carers of people with PMLD, where physical examinations are crucial to monitor their relative’s health. There are also concerns about the lack of health input for people with PMLD in supported living or residential care.

Family carers are anxious about restrictions on accompanying their relative to health and hospital appointments, and not being able to stay with them if they are admitted to hospital. Family carers are particularly concerned about not being able to be present in medical decision-making processes, such as decisions on Do Not Attempt Cardiopulmonary Resuscitation orders.

Lack of access to family members in residential care/hospital. A big issue for family carers is not being allowed to visit their relative if they live in supported living or residential care. Some family carers with a relative with PMLD had not had any face to face contact with their relative since the pandemic began. Family carers are frustrated that paid carers are in regular contact with their relative but families cannot visit despite also performing caring duties. Family carers describe how they have devoted their lives to caring for their relative and now feel more invisible than before.

Lack of information. Families lack clear guidance on coronavirus and restrictions being imposed, including clearer guidance on shielding, PPE and testing. Clearer guidance on testing is particularly urgent for people with PMLD and those who need 24-hour support.

Experience of using digital platforms. Restrictions on connecting face to face have led to an increasing use of digital platforms to keep in contact for some families, but others who do not have access to this technology struggle to communicate with their relatives in supported living or care homes. Digital platforms can be more inclusive for some family carers as this is less disruptive to their daily caring responsibilities.

Impact on the family carer: The coronavirus pandemic is affecting both the mental and physical wellbeing of family carers. Families are taking on significantly greater caregiving duties, leading to families becoming emotionally and physically exhausted. Physical tasks such as moving and handling, personal hygiene, dressing, feeding and managing difficult behaviours have become increasingly difficult. Spending increased amounts of time together, in the absence of usual activities and routines, can result in increased tensions within some families.

There is no doubt that the life changes associated with the coronavirus pandemic are affecting the lives of families with people with learning disabilities and greater support needs across the UK. Shielding and social restrictions are significantly increasing social isolation and stress for some families, just as much needed services and supports have been reduced or withdrawn.

Chris Hatton and the Project Team


COVID–19 Key Issues for people with learning disabilities – Blog 1


Living through the coronavirus pandemic – what are the urgent issues for people with learning disabilities in November 2020?

Logo

As part of our project [see more here www.covid19learningdisabilities.co.uk] we are finding out about the urgent issues for people with learning disabilities and families of people with greater needs as the coronavirus pandemic continues, so we can make sure our surveys reflect what matters to people over time.

These are the most important and urgent messages we heard about people with learning disabilities living through the coronavirus pandemic as a second wave of lockdowns were beginning to hit across different parts of the UK. The issues people talk about are very similar across Scotland, Wales, Northern Ireland and England, and the issues we picked up are very similar to those reported across a range of sources (see our brief summary report www.covid19learningdisabilities.co.uk/results for a list of these sources).

Urgent issues for people are changes in support, health concerns, restrictions on seeing family, lack of information, and experience of using digital platforms.

Changes in support. Reductions or removal of support during the coronavirus pandemic is a major issue for people with learning disabilities. Changes to support include the removal of care packages, including home care, day centres and day activities, and reduced or no contact from community learning disability teams and other professionals. Some people are continuing to be charged for services and supports that have stopped. Face to face support has often been replaced by reduced levels of contact by phone. Direct payments have for some people been suspended or stopped, with no clarity about when they might be restored. Some people are worried that local authorities may try to justify not restoring care packages based on the fact that people have been ‘coping’ during the pandemic. Young adults with learning disabilities who are supposed to be ‘transitioning’ from education to adults services are being left in a state of limbo.

Assessments have also been delayed or their format changed in ways that people don’t always find helpful.

Taken together, people with learning disabilities can feel abandoned by services and professionals.

Health concerns. As the coronavirus pandemic continues, people are anxious about catching coronavirus and worried about the impact of the pandemic on their mental and physical health.

People with learning disabilities can be anxious or frightened to go out because they are worried about catching coronavirus, partly because other people’s behaviour (e.g. not complying with social distancing) can put them at risk.

People with learning disabilities are worried about being able to access the healthcare they need, including GP appointments, routine hospital appointments, and getting their prescribed medication. They can also be concerned about whether they will be treated fairly by health services if they do catch coronavirus.

Restrictions on seeing family. Limitations on access to family members is also an issue among some people with learning disabilities living in shared accommodation, where restrictions do not allow visits to and from their family.

Lack of information. A really big issue for people with learning disabilities is the lack of clear guidance and accessible information about coronavirus and what the rules are about restrictions on people’s daily lives. Clearer guidance on shielding, when people should self-isolate, and how to get a coronavirus test are all urgently needed.

Using digital platforms. Throughout the coronavirus pandemic, some people with learning disabilities have been using digital platforms for the first time or more often than they used to. This can mean more contact with extended family and friends and more regular contact with other people, for social reasons and for connecting self-advocacy groups. Other people with learning disabilities are experiencing digital exclusion. They may not have access to the right equipment or the internet, and it can be difficult to gain the skills and confidence needed to try and use new digital platforms.

There is no doubt that the life changes associated with the coronavirus pandemic are affecting the lives of people with learning disabilities across the UK. Shielding and social restrictions are significantly increasing social isolation for some people with learning disabilities. People with learning disabilities can feel that society has forgotten about them, as their usual supports reduce or stop and their social lives are curtailed.

Chris Hatton and the Project Team


December 2021

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