Session Topics:

– National Strategy for Disabled People, the current Covid pandemic and the post-covid recovery
– Long term commitment and ideas

“I am a full-time carer and disabled person so I am concerned for shielding people especially those with physical and mental health issues who have not been able to access food. That category has gone and there is now no support or provision for people. Also long term there will be more pandemics and I am not sure lessons will be learned.” 

“There needs to be an investigation into shielding. It was not a success and I have been a key worker throughout the pandemic until a few weeks ago when I got a shielding letter. So many people have been placed at risk.” 

“Really concerns around disabled people’s ability to stay safe during the pandemic. As a wheelchair user, it has been harder for people to even acknowledge my own need for social distancing. As society starts opening up again, restaurants and pubs are starting to open up again and preparing their street and pavement areas where they will layout tables which automatically means our ability to move around safely is reduced. Disabled people’s ability to use public transport has been an issue with the reduced numbers, we are the ones who have to sit as people walk past us, we can’t always move out of the way.  

No support for shielding for later parts of the pandemic. At least during the first pandemic, we had food parcels, while they were not always great, at least I knew I had food coming in, this wasn’t the case for later parts of the pandemic.  

Such a lack of from the government around the complexity of those who need social care, residential homes were not just full of older people, a lot of disabled people live in them as well – they really struggled to get vaccines, PPE and general support.” 

“Worried about the vaccine passports, my son isn’t able to have the vaccine, we have had it all to keep him safe. He is a very social lad and I am worried he will be excluded from going to restaurants and pubs later on because he can’t have the vaccine due to medical reasons.  

Some of the benefits and extra support were not extended to disability benefits during the pandemic, it really should have been extended. The £20 uplift to universal credit should have been extended to carers and other disability benefits.”  

“Whole parts of town centres are being made hard to access with the table and chairs being added to the street, more care needed to be taken when designing this, it can already be hard for disabled people in wheelchairs to get around.” 

“The strategy needs to take on a multifaceted approach, from work to home life. It needs to be made clear the workplace goes into homeless, especially mental health. We need to treat it with the intersectional lens it deserves. Carers, especially unpaid carers should be a key feature in any strategy, they are juggling their homes, families and caring responsibilities – they are the forgotten people, even though they contribute a lot to the economy. Why are we not being looked at or looked after, even though we may need a little extra support! The purple pound contributes a lot to the economy, we deserve more.” 

“The use of DNR’s were so shocking – I had one attached to my file and I had no idea about it. On the complete opposite, the good parts should be kept, including the use of Zoom and other technological advances. Those advances and the flexible working have been great, it would have been unheard of before, we can’t lose them.” 

“I’ve been shielding for over 12 months and it has been appalling. In August 2020 the Alzheimer’s society stopped welfare calls. Shielding is now over but all the groups I go to for dementia support are not open and we are not sure when it will be and it will be a huge challenge for those who will go out again. There is also no support out there dementia under 65 in NHS so just kind of meandering along.” 

“Shielding for around a year due to chemo. Lots of people were missed from shielding and did not have the support that they needed.” 

“If you live on your own you are in solitary confinement. I caught covid going to A&E for a badly broken shoulder so now I have ME and long-covid. I am retired so at least am not expected to work through it but there is no medical support, lack of any understanding and my MH has suffered and I have lost the ability to socialise.” 

“I have been shielding for the past year lost both my carers and social care package was reduced and I am not sure I will get my carers back from Leeds City Council at all or seriously cut. Shielding may have ended officially but I am struggling to take care of myself and from communications, I have received I do not expect to get my care package back.” 

“I am disgusted with the Labour Party with regards to that. The LP should be campaigning for the Government to abolish social care charges – previously most of my income went to my care package. It says you are not allowed a life – just existing. There are other LAs, some Conservative, that have abolished social care charges on the back of legal action by disabled people/ disabled people activists but in Leeds that is not the case.” 

“Direct payments you can get the council to manage your direct payments for you – some councils only allow you to have them for a PA – that is wrong. National Care Service but I have not heard Keir or Jonathan Ashworth talk about it once. He needs to talk about shielding, DNR, national care service and keep raising them. Shadow ministers should be on the news daily. My local Cllr said there is nothing that can be done until we are in government and I think that is completely the wrong approach when we are suffering now.” 

“Carers/ parent carers have had no access to respite care for a year now and with no support. Need to hold the Govt to account on this but also think about long term effect and mental health of those people.” 

“Concerns about direct payment scheme the way it has been put in place is a way of cutting money – being told you must recruit, train and provide PPE for a carer is unreasonable and places a huge amount of administrative responsibility that the local authority should be taking up.” 

“I ended up with debt on the back of the direct payment scheme. The carers I employed were claiming for hours that they have not done. The council gave me a responsibility that I could not manage due to my disability and now I have a large debt and feel like I have got myself into a disaster and I have no control over it. I have had to get rid of my carers because of that as I cannot afford carers and my debt.  I am struggling much more now, without carers, and I have not seen anyone for a year. When I try and go to the shop I get in trouble for breaking rules that I do not quite understand and have been physically and verbally attacked by staff and the public which makes the whole experience of trying to get food much harder. I have only seen my social worker twice whereas before I was seeing them on a monthly basis. She did not understand when I was trying to communicate that I was really struggling and so I feel totally cut off from the rest of the world.” 

“Last year about six weeks after I had my shielding letter I found out I had a DNR on my medical records. I already had an advanced directive but that is only to be actioned in certain situations. I had to take legal action to have the DNR removed.” 

“Issues for those who are experiencing Long-covid to secure reasonable adjustments. The Equality Act’s definition of disabled/ long term health conditions requires you to be ill/ likely to be impacted for at least one year and this is hard to meet. A provision needs to be made.” 

“Funding – There was a Despatches documentary in March that covered a long-covid clinic in Bradford that had already been forced to stop taking referrals due to lack of funding. Funding should be long-term and it does not make sense to pull funding when we do not even understand the scale of the issue of long-covid or long term impacts.” 

I was working for the NHS until 5 years ago but due to medication changes I ended up on their sickness policy and was made redundant due to my disability through no fault of my own. My hidden disability causes me a lot of trouble and I still feel annoyed about losing my job after 17 years until they changed where I was working. I did not know I had autism until they changed my working environment into an unsettled place which led to me being diagnosed but I now have nothing. It was not my fault but my employer’s I was happy and good at my job where I was.” 

“A lot of the above rings true with me. When I became a teacher before the Equality Act there was no way that any adjustments would be made for me. Despite the Equality Act I think that still goes on. When I became disabled I became ‘unpersoned’ – I had to withdraw from opportunities as I could not even face the interview.” 

“We are there at the bottom of the heap and I would really like to see the LP taking a much stronger line on what is happening also for Disability Officers. We cannot have captions on our meetings as it costs too much and we are not allowed to use Otter.” 

“LP when will we fund accessibility for carers and disabled people to meetings? Our voices are not getting heard. Blended meetings need to be funded and we need training for disabled people to succeed and non-disabled people to support them in doing so.” 

“There are often lists of protected characteristics but often disability is left off within the LP.” 

“I know of many disabled LP activists who have given so much are now thinking of leaving as they cannot take anymore.” 

“That sense of not being a person continues and under Blair support for disabled people claiming benefits fell – the Labour Party now really has to reverse those attitudes which result in horrific things like DNR notices and suspicion of anyone claiming benefits and poor treatment. I needed care when I broke my shoulder and it was not possible but I still consider myself lucky as so many people do not have financial support or their basic needs met. We have reached a stage of state abuse for people for being disabled.” 

“We have rights under international law but the CRPD is not properly put into law and politicians appear to not have significant knowledge. The DNR breach these. I am four years after diagnosis I have not had any rehab.  Once they get their diagnoses so many people are left to fend for themselves. Phillip Alston’s 2018 report tore this country to shreds and he said it was government policy to reduce disability spending by 20%. The ONS found that 25.3% of deaths were people with dementia, over 90000 were those in care homes we have been sacrificed on the altar of covid and we are going back to the 1930s. The way we have been treated is like the Holocaust we have saved the country millions.” 

“We want disabled people being consulted and involved in LP policy. I think we need to get more disabled people’s voices heard.” 

“After ‘Nothing about us without us’ disabled people feel incredibly let down that the front bench are not talking about it. Disabled people are dying and there is not sufficient attention being paid to it or support from leading voices.” 

“I would like to see the LP to get really tough on the acceptance of ableism. There are frequent comments/ hatred that is directed online to disabled people following 2010 welfare changes. Disability hate crime has increased so much over the past year and prosecutions are down and it leads to outcomes like DNRs.” 

“DWP to restart face to face assessments for PIP when they deem that they can assess people appropriately. Some of those appts will be home visits which places shielding people at risk. Assessments are a tool for the DWP to misuse.” 

“Professor Debbie Foster @ Cardiff Uni – Legally Disabled report she has just written a report on COVID/ Disabled People in Wales.” 

“The Government did a big disabled people’s strategy but it did not get to the people who needed to say anything and some of the questions were disgusting – what would your view be on having an intimate relationship with a disabled person. There was not enough time to complete and I could not get an answer on who they had consulted to put the survey together. This event needs to be repeated with members of the Shadow Cabinet – Starmer/ Ashworth.”  

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