Where’s the support for disabled and older people living through major fire safety remediation works?

Although our focus is on leaseholders, we campaign on behalf of everyone experiencing additional and complex access barriers as a result of this crisis, across housing tenures.

We aim to raise awareness and secure support for disabled and older people in relation to:

• Fire safety and associated costs
• Being trapped in unsuitable, inaccessible and unsafe housing
• The impact of remediation works and on health and care systems
• Our community’s disproportionate lack of resources to bear the cost of the crisis.

We are most well known for campaigning for the implementation of evacuation plans. We took the Home Office to Judicial Review in December 2020 on this issue and we recently received the judgment. Here is our response: claddag.org/news-views/

Photograph: CLADDAG

We have raised the issue of the impact of remediation on disabled and older people, locally and to central government. This is my main focus for this opinion piece. As an unusual situation, with budgets and services stretched and as the issues cross over services and departments, there appears a disconnect between the responsibility of local, regional and central government. This is blocking access to resolutions that disabled and older people need.

My situation

My name is Georgie Hulme. I live alone and am a 44-year-old leaseholder living in Manchester. My flat is on the third floor of a multi-height building. My lived experience of navigating the complexity of the building safety crisis as a disabled person, is hopefully useful to others and can inform policy.

I inherited the flat in 2016 from my late mother, who was a disabled pensioner. Ironically, she chose to die at home, because that is where she felt safe. She wanted to pass that safety on to me, by gifting me her accessible flat and providing me with home security for life. It breaks my heart, with what has transpired since. However, I’m relieved she isn’t here, having to live through this traumatic ordeal.

Georgie Hulme is co-founder of CLADDAG. Photograph: CLADDAG

Living through remediation works is frustrating and unbearable for anyone, but can be particularly debilitating and dangerous for disabled people.

I have multiple impairments and health conditions. Drilling into the walls is unpredictable and deafening. This will cause me episodes of sensory overload. My vision will become blurred, I will have brain fog and need to spend time in a dark low-stimulus room until it passes.

My OCD means that I am experiencing physical pain, at even the thought of what’s to come. I cannot go out on my own, as I need assistance at all times to leave my flat. I have very limited hours of assistance from personal assistants. On any day, if things became unbearable for me, I won’t be able to leave the flat to escape for a break, when I am on my own.

Additionally, the impact of dust can be dangerous for people with health and respiratory issues. I also have to think about the wellbeing of the personal assistants I employ, who provide my social care. Some also have health conditions. How many will wish to work on a building site?

To date, there has been no acknowledgement of the need to increase support hours to help us through remediation works. How can the full responsibility be on local authorities, following major budget cuts and services overstretched?

Many people do not receive any health and social care, although they need it. Others might not meet the criteria currently, but might on a temporary basis, when they have to live through remediation works. Imagine how disorientating and detrimental it is likely to be for those who have dementia, a learning disability or mental health problems for example? Not everyone has social networks and for those who do, it cannot be assumed that informal carers are able to provide additional support for a prolonged period. The stress on informal carers often gets overlooked.

We know that flats are colder through periods of works while cladding is removed and replaced. Compensating with central heating is vital for disabled and older people. We already know our community is having to choose between the cost of heating or powering ventilators and charging other essential equipment. Many of us are on fixed incomes. The cost of living crisis on top, is hitting us hard, with many having to take things day by day, making impossible spending choices.

Many people become disabled unexpectedly, as I did as an adult, or they have a progressive condition, meaning that the housing they are currently in, is not only unsafe due to fire safety issues, but the environment no longer meets their needs. This crisis prevents leaseholders from being able to sell up until the works are completed or tenants from being able to move elsewhere, because there isn’t anywhere suitable available.

I have previously lived through major refurbishment work, including cladding installation, so I speak from experience.

I previously lived in a social housing block on the 13th floor, which had major refurbishment works, including new cladding. This turned out to be ACM (aluminium composite material), that was also put on Grenfell Tower and so many buildings. It feels naïve now, but back then, I thought it was positive and was going to help us tenants. I had no reason to doubt this, but effectively both my Mum and I were living in fire traps and like so many had absolutely no idea.

At this stage, I don’t know the full extent of the works required, time frames or if I will need to move out. Initially my social worker advised that there are two accessible flats, which I would be eligible to access for up to six weeks, provided they are available. In the current climate this is unlikely and now responsibility is being questioned. Is there an upper limit of the cost of temporary accommodation and is this higher for those disabled people who might need a wet room or space for a hoist? Where appropriate, could hotel accommodation be accessed? These are among so many questions that it has so far been impossible to get any answers about. People respond by looking panicked and flummoxed and clearly don’t know what to say or do.

Some people might have to move out of area, even if that isn’t far. This runs the risk of health and social care not accepting funding for all the time that someone needs to move out of their home. What are people supposed to do then? Start a new package with a different authority, which from experience can take several months or longer? Or under special circumstances, can funding continue for the duration?

Fearing for my safety, my finances and my future for the past four years has made me ill. I have been hospitalised many times, on one occasion following an episode of being unresponsive for 10 hours. Consultants advised that the cause of these continued episodes is high levels of stress.

I’ve been prescribed anti-anxiety medication for panic attacks and being unable to mobilise from bed. I have no doubt many people are experiencing worsening physical and mental health, resulting in many of us requiring additional health and social care services, due to this crisis. This is inevitably having a real impact on services that are well known to be overstretched as it is.

Summing up

Although I’ve focused on my experience as a case study, I’ve also drawn from the experience of others. People contact us with all sorts of harrowing situations, but, like us, there is no support in sight. We urge the government and services at all levels, to take time to understand the additional and complex ways in which disabled and older people are impacted by the building safety crisis and, in particular, coordinate cross-departmental policy to address:

• The health and social care impact of living in flats undergoing remediation works
• The disproportional impact of the financial burden of the crisis on disabled and older people
• Provision of accessible alternative accommodation.

Claddag will continue to lobby politicians at local, regional and central government levels, about these vital issues. When you are disabled and/or care about someone who is, you quickly learn that you have to fight for everything, whether it be for benefits, services, housing, etc. What we are asking is about people’s safety, wellbeing and dignity. For some, these issues are immediate and for others it will take years until all buildings are made safe. The accumulated stress takes its toll. We’re two disabled volunteers, alongside allies, trying to make a positive difference, fighting as much as we can, when we can.

On reading about the recent report by the Chartered Institute of Housing (CIH) stating a major housing underspend, including £245 million on building safety, I was and still am infuriated. With the general housing mess, combined with so many unsafe housing and limited accessible social and truly ‘affordable’ accommodation, it’s beyond ridiculous.

Therefore, a reluctance to plan for supporting our community through remediation works can’t all be about money, as there is allocated funding that hasn’t been spent. We will be urging the government to use at least some of this money to support disabled and older people through remediation works and to work with other relevant departments, including the Department for Health and Social Care, as well as lobbying at local and regional levels. We need clarity and support.

Georgie Hulme is co-founder of CLADDAG (Leaseholder Disability Action Group)

Follow CLADDAG’s campaign at:

claddag.org