Theme: Independent Living

‘Homes First sounds like a brilliant idea, what I am concerned about is how true that is for people with mental health diagnoses (including mental stress and trauma). In terms of the forthcoming Mental Health Bill, people like it because it includes improvements, however it is still not dealing with the fundamentals. It doesn’t look at the fact that the key thing to address regarding people suffering with mental health issues, is the unjust society we live in, and the huge stress and trauma caused by that. In that context, we shouldn’t be detained and forcibly treated for something which is compounded by the current state of our society. It is a complete breach of our rights in terms of independent living, especially under the convention for the rights of disabled people. It is also concerning that intersectional discrimination is not being addressed appropriately. Intersectional issues must be addressed properly otherwise it leads to further discrimination.’

‘There is a gap in attention to different age groups within disabled people. We concentrate on young adults aged 18-25, and the elderly. There is a massive gap in the middle which is essentially a forgotten generation, and this has gone on for decades and needs addressing. As far as getting help is concerned, for me personally, it’s an impossibility – I have been told by social services that they won’t even come out and assess me.’

‘There is a whole section of society who have disabilities where the government’s attitude has been ‘well you’re young, just get on with it’, and it’s not that simple. It perhaps would be, if the rest of society adhered to for example, the social model of disability and was as accessible as it needed to be so we could get out and about and use it. If we had equality and more services were available to us that we often require, then maybe we could have the attitude to just get on with it, but we don’t and we are still fighting for these things. Especially for the social model of disability to be understood by everybody, especially those in Government so we have the right messages being given out.’

‘We also require the sufficient level of funding being put in to ensuring that these things happen, and to the local authorities so that they can provide the support that people need. We are big advocates of direct payments, but it feels like there is always a fight to get more than just being kept clean and fed. There is much more that constitutes independent living that just being kept clean and being fed. People with disabilities want to be able to go out and about and achieve things but there are lots of barriers stopping us from being able to do that.’

‘People are living in inappropriate housing that is not fit for purpose. For example, they may not be able to access their own facilities such as the bathroom or kitchen, or some people are stuck in their beds and aren’t able to access the rest of the house. There is now a lot of emphasis on disabled people working. It’s very difficult to consider a future beyond the four walls of your house if you can’t even get out of your bed.’

‘There are so many things in the system that are working against disabled people, acting as a barrier. The cost-of-living crisis is the next thing that is going to greatly affect disabled people’s ability to access independent living fully. We are trying to provide our DPOs with as much information as possible on how to assist people with the cost-of-living crisis, but there aren’t very many options to support people. People living with disabilities may require more energy to, for example, charge their power chairs or use their stair lifts, or they don’t have the luxury to be able to walk or take public transport to go to the local shops. These are all costs that disabled people cannot cut down on if they want to live and function, and we need the benefits to reflect the increased cost of living. For example PIP, which aren’t means tested.’

‘I am very lucky that I can work full time, due to my care package and because of access to work. With Labour’s Home First policy, I have to admit that there is some confusion around that term because there is a term ‘discharge to assess’ where someone in hospital is discharged first and assessed at home. They key thing about independent living is that it is not the clean and feed scenario that we see on a day-to-day basis. I work as an independent living coordinator and the different between boroughs is quite stark. It appears that there is a disconnect between local authorities who are supposed to deliver services to support independent living, and disabled people.’

‘Part of it is the chronic lack of underfunding in social services, which means that the standard benchmark of what is acceptable for disabled people is pushed down and pushed down due to lack of available funding. Local authorities say that they try to treat everyone equally, but for disabled people that doesn’t work as there are a range of different needs and required services.’

One of the key issues we are facing on a day-to-day basis, is the mismatch between what people are allowed to keep under the minimum income guarantee, and what they really need to spend just on daily living like utility bills. And these costs cannot be claimed as a disability related expense, so you can’t offset that care charge. As assessments are getting stricter, people have fewer opportunities to live any kind of real quality of life or independent life that they would like to live, because they are being disabled by the systems. This is where the social model comes in; we are disabled people, disabled by the system and barriers in society rather than disabled by our impairments. Labour really needs to push the social model, the right to independent living as not just about social care but also about all the other services that are available to people or not depending on what they need.’

‘We have nobody at all policing the Equality Act. For example, there are buses that are refusing to pick up people in wheelchairs because they have to get the ramp out, and taxis that refuse to pick up people in mobility scooters. In a rural area, this means I cannot get out of my village. Also seeing the closure of public toilets that are near a carpark, meaning there are fewer public toilets that are accessible to disabled people. These changes have been made by local government without consulting third parties such as disabled people, professionals, charities.’

‘The Equality Act and the Human Rights Act are already discriminatory towards people with mental health diagnoses. It is necessary to make sure the Human Rights Act is a full rights act and is strengthened further. These pieces of legislation, instead of dealing with all the issues in society, the solution given to those with mental health diagnoses is to lock them away forcibly treat you. For example, someone who has suffered abuse and has resulting mental health issues – if they are forcibly taken to hospital and treated, that only serves to make the problems worse.’

‘I am concerned that in the Queen’s Speech, it was mentioned that the government would be making some changes to the Human Rights Act. It feels like we need to safeguard what the Human Rights Act is and that parts aren’t taken out to suit the government agenda. Also, the government consultation on the Human Rights Act was also inaccessible to disabled people’.

‘There is a lack of accessible toilets or changes places for disabled people. If you can’t be certain that you will be able to access a toilet when you are out in public, it would of course stop you confidently leaving the house. Being told to use the local business facilities is not helpful, because a lot of them don’t have the accessibility facilities required.’

While we want better and more support for unpaid carers to provide support for their families, we don’t want to go back to a place where disabled people are solely reliant on the goodwill of friends and family or charity, to live a good life. The Independent Living Fund that was dropped was a key way for disabled people to have a real quality of life equal to that of their peers, and we all mourned the loss of that fund that provided support to so many. Re-nationalising this type of support would be beneficial, rather than having it doled out to individual councils. I would recommend that Labour looks into a support service run by DPOs for disabled people, and not continue doling out money to local authorities, and also a reframing of the phrasing of Labour’s Home First offer as it comes across in a way that maybe is not what it means.’

‘Ideally, we would like the support that disabled people need to be free to anybody. That would be the absolute preference, but often disabled people have not had the same opportunities as able-bodies individuals to build up savings to support themselves throughout their lives. So, we still need the support but not if it is going to take every last saving we have.’

‘Local authorities have the decision-making power to allocate funding. They make the decision to limit or restrict the money, and in the Care Act there is nothing that addresses this. Unless there are changes in the way that social services support funding is managed in the future, I can’t see any local authorities wanting to make changes on their own. There are much smarter ways that local authorities could be spending the money to provide better support to disabled people, however there is often a very paternalistic element to local authorities where they don’t agree to spend the money is a different or flexible way despite clear solutions being offered.’

‘It is encouraging to hear about the Renters Bill, but my worry is for those disabled people that rent privately, is the increased cost. Also, if private landlords are required to make necessary reasonable adjustments for disabled tenants, then this must be accompanied by rent control for private landlords because otherwise the tenant will have to shoulder the costs through increase rent for example, and rents are already sky high. The Renter’s Bill also doesn’t include anything on the behaviour of landlords, for example psychological abuse or threats to tenants.’

‘I would love to get back into the workplace, but I would need to re-train to be able to do that. Manual labour caused my disabilities, and now I need to train properly to acquire different skills to get a job. There is no way to do it anymore without it costing a lot of money. Together with problems with public transport and support from local authorities, re-education is made even more difficult which impacts ability to achieve independent living.’

‘During the pandemic, the important of digital connectivity was made clear. However, even if disabled people were given a tablet or access to online, there is a question of whether they can actually use it or have been given the training to use it. Also, with the cost-of-living crisis, is access to data going to be something that people will have to choose to get rid of to afford other things.’

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