Session One: National Strategy for Disabled People, the current Covid pandemic and the post-covid recovery 

Notes from our discussions with attendees

“The Government doesn’t have a strategy, they don’t listen to us. The forms they wanted us to fill in were not very accessible. If Labour wants to have a strategy, it needs to ensure it is as accessible as possible. I requested an alternative format and it took ages to receive it. The issue of BSL interpreters at the press conferences is disappointing, we don’t get why they can’t fix it. BSL should be officially recognised as a language.”  

“The consultation from the current strategy isn’t asking very relevant questions, any future strategy needs to ask important real-life questions. How can a strategy help us if it doesn’t ask proper questions?”

“Communication is very important. If you’re not able to speak verbally or all the time, it can be so hard. It can be impossible to access assistive technology.  Most Speech and Language Therapy (SALT) teams do not have access to adequate funding, I have had to spend a lot of my own money initially, but thankfully I now have my device funded by the NHS via a charity. The issue is, it is a postcode lottery, PIP isn’t going to cover a complex device if needed, so it should be standard that people can access funding and assessments wherever they live. Any future national strategy needs to include proper funding for complex equipment.” 

“A Labour national strategy needs to follow the policy of everyone having access to the internet, doesn’t have to be from a fancy piece of kit, could be a tablet. We need to ensure disabled people, especially children, have this access, it really is a lifeline.”  

“The strategy needs to ensure our lived experience is at the heart of it. Take the e-scooter as an example, as a blind person, it is really hard to get round the streets. It seems like a lot of money for infrastructure is available, but we aren’t being consulted when it comes to planning these schemes so can’t feed in the disabled person view. Disabled people need to be consulted when making infrastructure plans and decisions.”  

“A strategy needs to ensure an end to postcode lotteries, especially when it comes to different counties. Military families for example, we move about a lot and my child is disabled, while he met the criteria for a wheelchair, a social worker and other support in one county, he didn’t in the other. As a military family, we have to move about a lot so the issue of a postcode lottery is a real problem for families like ours. We need a universal guideline; each county should move away from what they consider disabled and what they don’t. As it stands, we are using a wheelchair he has outgrown.”  

“The problem with having more than one social worker is at times we are being passed between teams which slows support down. Any plan needs to talk about stronger joint up working and care plans which are communicated properly, both within the same authority and when moving across the country. When you have various conditions, which may come under physical disability and mental health, you end up going round in circles. Everyone should have a key social worker who bring together other teams if needed, it shouldn’t be people who need the service chasing them for support. If this isn’t the case, disabled people should be informed of their rights and be given the confidence to challenge if needed.” 

“A lot of the issues with social care and the cost of paying for social care can be fixed if the Government invests properly. People shouldn’t have to worry about this part of their lives. At a local level, teams and local organisations would be less likely to be protective of their budgets if they knew funding was assured. A national strategy needs to have a vision and a plan for feeding into any changes to social care.” 

“The strategy really needs to think about an education plan or a communication strategy for wider society,  breakdown those perceptions of disabled people not being able to contribute to society or normal.” 

“The Government’s green paper isn’t going to help disabled people.” 

“Another concern is the joint assessment process – when you lose one benefit, you lose them all. ESA and PIP are for completely different purposes – the criteria shouldn’t be that close. One is an allowance, the other is a benefit.”  

“There have been some positives from covid-19. Zoom meetings and people working from home gives greater opportunity for work and participation, particularly for those who live remotely. Downside – many have been in isolation and at points have crumbled due to the uncertainty of the situation.” 

“There has been a lack of support for people with mental health problems throughout the pandemic. This is only going to be exacerbated for those with long covid.”  

“The National Disability Strategy is unlikely to be very good. I’ve sent a complaint letter with members of the DPO forum to the Government as there has been no consultation with DPOs about the national disability strategy. Four months in a row, meetings were cancelled, legal action about how the consultation has been done is underway.”  

“Manchester Disabled People’s Big Disability Survey – biggest survey done by a DPO in Britain.” 

“Disabled people accounted for 60% deaths but make up 20% of the population.”  

“Disabled people have been faced with three crises: austerity, covid (disabled people unsupported) and council/LA cuts – lots to adult social care. Oldham Council voted for £8.9milion of cuts – mainly focused around disabled people.” 

“Recovery – tackling inequality has to be at the centre of the strategy.”  

“English society is going to look radically different to how it has been before if we do not tackle the inequality in our society. We’re going to see more exclusion, institutionalisation, lack of employment opportunities, persecution of disabled people through the DWP.”  

“Genocide of disabled people during Covid – we need a public enquiry into what happened and how deaths on this scale could be allowed to happen.”  

“Very concerned about the do not resuscitate orders applied to disabled people during the pandemic.” 

Session Two: Long term commitment and ideas

Notes from our discussions with attendees

“Drop the idea of having to go to work – people should be able to work from home if they can. Covid has shown that people can work from home.”  

“Disability discrimination cases – it has always been difficult for disabled people to have to face their abusers in court, such as in employment cases. In other cases, for example domestic violence, people do not have to attend court. This needs to be the same for people with a disability. It’s difficult to get legal aid and proper solicitors for disabled people in these cases, more support is needed.”  

“Diversity and equality are used as a political buzzwords. We need to make sure that equality and accessibility are built in from the ground up – not an added bonus.” 

“Retention is a massive problem in the employment of disabled people. There is a lack of mentoring and support for disabled people in the workplace.”  

“There is a hierarchy of impairments in political/employment spaces and stigmatisation of visible disabilities.”  

“There is a lack of job-sharing opportunities in the political sector, more of this could help encourage people with disabilities to progress and get into leadership roles. There are very few disabled candidates being put up for office. It can be quite challenging for disabled people to speak up in political spaces, due to a lack of self-confidence.”  

“Disabled people face people with unconscious bias towards those with disabilities. Sometimes this veers into disability discrimination and this can be hard for disabled people to determine.”    

“Accessibility of council meetings. Some council meetings do not use accessible software for those with sensory impairments.” 

“1/3 million driving licenses were revoked for medical reasons by the DVLA, worrying as disabled people rely on their Motability cars to get around. This could lead to increasing isolation.”   

“The biggest changes needed are to Work Capability Assessments (WCAs). I found this a very traumatising experience and attempted suicide afterwards. There is no need to put people through this level of stress, pain and suffering for the sake of saving a little bit of money.  The only reason WCAs are considered acceptable is because disabled lives are not valuable to the Government.”    

“Wheelchair access should be available at the front door, rather than via a ramp round the back.” 

  ”The only way forward is for disabled people to organise and agitate together so that they can’t be ignored.” 

 “Labour has a good foundation in the disability manifesto/ neurodiversity manifesto. Please do not dismantle this – build on it.”  

 “There needs to be collaboration between unions, DPOs and national organisations.” 

 “Some of the resources that were previously available for disabled people are no longer available.”   

 “Why should disabled people have to keep challenging things all the time?”  

 “Resources for DPOs are needed to drive these things forward.”  

 “More accessible information is needed.”