National survey: Leaseholders who have impairments or health conditions

We have launched a survey to gain a broader and deeper understanding of the ways in which leaseholders who have impairments on health conditions are affected by the building safety crisis.

https://www.smartsurvey.co.uk/s/SVODM0/

Please take part if you are a leaseholder and live with any physical impairments or mental health conditions. This could be related to age. The survey is not just for people who consider themselves to be disabled.

At this stage, we are specifically collecting data on leaseholders (owner-occupiers), not tenants who are renting.

The survey should take 5-10 minutes. If it is not accessible to you, or you find the exercise distressing, contact us and we will help you to find a way to be involved.

Graphic of six rainbow-coloured speech bubbles spelling out "survey"

Waking watch: disabled residents

An alarming number of developments are being forced to keep Waking Watch in place due to one or more people living in the block who cannot self-evacuate.

Blurred images of a person in a high viz jacket which says waking watch on the back, walking away from the viewer down an empty corridor of a block of flats
Waking watch patrol buildings 24 hours a day

We advocate for the rights and safety of disabled and older people living in blocks of flats but are, nevertheless, very disappointed in this approach. As leaseholders ourselves, we share the enormous financial and emotional pressure placed on us by the building safety crisis. The costs of requirements like waking watch is financially damaging for us all, disabled or otherwise.

1 in 5 of us are disabled so it is highly likely that at least one disabled person lives in every block of flats around the country. Does this mean that waking watch is needed in every general needs housing development in the UK? Clearly not. So this haphazard and misguided advice needs to stop.

One of our ‘key asks is for the Government is to ensure that any costs associated with a disabled person’s safety are taken out of the hands of leaseholders and should be centrally funded. We fear a sense of resentment and hostility to specific individuals blamed for any additional costs in the service charge.

In the meantime, we have put this advice together with expert input to help developments challenge a refusal for waking watch to be withdrawn/reduced due to the presence of someone who cannot self-evacuate.

Encourage a personal emergency evacuation plan

We encourage all developments (and responsible persons) to regularly survey its occupants and ask open questions about their ability to self-evacuate. It is wise to avoid words like ‘disability’, ‘elderly or ‘infirm’ as many people who don’t consider themselves to be disabled (but would struggle to self-evacuate) might not engage with your survey.

Remember that nearly half of those who died in Grenfell Tower were disabled so we have to accept that this is an important issue that can’t be ignored. 

For years, disabled people have been the victim of a dangerous policy of staying-put and waiting to be rescued. Even if the fire is in their flat or on their floor, many disabled people are unable to move vertically to a place where they are safe. It has finally been accepted that this approach is wrong, particularly when we know that one’s chance of survival in fire falls significantly if you don’t get out within 20 minutes. Wherever possible, a disabled person should be given early warning of a fire in the building to give them the maximum time to evacuate safely and should be a priority.

Clarify if there really is a need for a buddy

Not everyone who cannot self-evacuate needs a physical person with them. Some may need priority warning to give optimum time to evacuate or need communication aids. See our blog here for more ideas on this.

Challenge why a buddy must be waking watch

If someone does need a helping hand, why can’t it be a volunteer? Studies of evacuations of high rise buildings show time and time again that people help others in an emergency.

Phil Murphy, HRRB Fire Safety Consultant, says it’s wrong to assume that only employees can fulfill the role of a Trained Evacuation Assistant (TEA) and that, in fact, most people with a basic level of fitness can be trained in a couple of hours. “Research has proven beyond all doubt that helping each other in emergencies is what people instinctively do. Partners, live-in relatives, carers and neighbours are all most often very willing and able to be TEAs. Using the excuse that no employees are present is a poor one and, having been proved false, it is no longer acceptable.”

Guidance says that waking watch does not need to an employed person as long as they meet the person specification criteria (A4.6). So why does someone need to paid to offer an arm to a blind resident to go down the stairs?

There are also important questions to be asked around employers’ liability for requiring the waking watch to ascend a building and physically support a resident to evacuate. 

In fact, from the responsible person’s perspective, the legal liability is the same whether the buddy is an employee or a volunteer. A volunteer does not increase liability if protocols and training are in place. In fact, as employees are covered by Health & Safety at Work Regulations, extreme caution should be taken before involving employees in an evacuation that could put them in increased danger.

We urge you to ask questions around what the waking watch will specifically do for the disabled person(s) in the event of an evacuation. In our personal experience, things can get very ‘wishy washy’ so do not be afraid to pin down precisely what tasks the waking watch are expected to perform for the disabled person. Do not accept vague statements like ‘assist the person to evacuate’ – ask for specifics. Will they knock on the persons’ door to check they heard the alarm? Will they physically carry the person down the stairs if they can’t walk? Will they simply give a guiding arm whilst the person walks down the stairs? Will they push the person down the stairs in an evacuation chair?

When you have this list, this will enable two things to happen:

  • Realisation that the expectations on the waking watch are not suitable and the plan needs rethinking; or
  • An opportunity to demonstrate that the tasks could easily be fulfilled by a group of neighbours as volunteers (with the disabled person’s consent)

Involve the disabled resident

The financial pressure placed on all leaseholders is wholly unreasonable and everyone is feeling anxious about the safety of their homes. However, the situation is deeply terrifying for those of us who cannot self-evacuate so please be sensitive in challenging your current waking watch position.

Ask your agent if the tasks/actions assigned to the waking watch to enable the disabled person to evacuate have been fully laid out to that person and agreed by them. This is part of ensuring the specific tasks involved are clear, transparent and agreed by everyone.

Has the Fire & Rescue Service asked the disabled resident whether they have a social worker who could be involved in the discussion? There may be scope for alterations to a care package (if relevant) to reassure all parties. The disabled person’s consent is essential here. We are aware of several disabled tenants who cannot leave the flat unaided or self-evacate and are lobbying their local authority for increased care hours so some people may welcome the support of the Fire Service in pushing for this.

As part of this difficult but important conversation, you can also help by challenging anyone who asserts the myth that disabled people can just sell up or be rehoused to a ground floor flat. More on that here.

Everyone must have the right to evacuate a building if their life is in danger. However, insisting on waking watch provision in this manner is not the answer.

All-Party Parliamentary Group on Disability and Fire Safety

The APPG on Disability is jointly hosting a meeting on 12 July 2021 at 2pm to highlight the importance of the Government’s consultation on Personal Emergency Evacuation Plans for disabled residents unable to self-evacuate from buildings. 

The meeting will cover the Government’s key proposals and have input from disabled residents as to how the proposals need to be strengthened. The consultation closes on 19 July 2021 and it is vital that the views of Disabled People are heard.

The consultation seeks views on implementing the Grenfell Tower Inquiry which recommended that building owners and managing agents are given the legal responsibility for producing and storing Personal Emergency Evacuation Plans for residents of high-rise buildings unable to self-evacuate.

Line Up: 

2pm Welcome from Sir David Amess 

2:05pm – Keynote Address from Minister of State for Building Safety, Fire and Communities

2:15pm – Elspeth Grant, Expert advisor to Disability Rights UK

2:20pm – Sarah Rennie, Co-founder of Claddag (The Leaseholder Disability Action Group) 

2:25pm – A Grenfell Tower Survivor (Name tbc) 

2:35pm – Questions/Discussion  

2:55pm – Closing Remarks from the Chair  

Joining Link: https://us02web.zoom.us/j/87193895050 (no password required)

Mythbusting PEEPs #5: “You should be living on the ground floor”

There are two key problems with this view: 1) ignorance about accessible housing stock, and 2) failing to respect the right to choose where we live and why.

Accessible housing options

According to the Hidden Housing Market Report:

  • 1.8 million disabled people have an accessible housing need
  • At least 1 in 6 households that need accessible homes do not currently have all the accessibility features they need. 
  • The majority of those with accessible housing needs are already home owners.

Accessible housing campaigner, Fleur Perry says: “Accessible housing is a key pillar of Independent Living. Government need to act and make sure that we’re building the right amount of accessible housing and not continuing to let people down who have nowhere to go.”

So we need to frame this conversation within the frustrating backdrop of the lack of choice for disabled and older people.

1.8 million disabled people have an accessible housing need

Affordability

The average bungalow in the UK costs £288,000. This is significantly more than your average one or two bedroom flat so – whether renting or buying – flats are naturally more affordable for many people.

Suitability

There are many reasons why a disabled or older person may choose to live in a flat. As Claddag campaigner, Liz Kimber, explains “the set up of apartment-living works well for people with disabilities.” For some, this will be the lower maintenance needs, including a lack of garden and smaller footprint. Others value the support and security presented by a concierge service. There’s also the sense of community and company offered by neighbours in an apartment block.

Two images side by side. One shows the arms of someone with purple sleeves reaching for a kettle, whilst holding a mug on a lowered counter. The other shows a wheelchair user opening an oven located at a suitable height.
Credit: The Hidden Housing Market Report

Competing priorities

We shouldn’t disregard the usual factors everyone applies to choosing where they live: transport links, proximity to work, access to schools and hospitals, links with family and friends. If we are lucky enough to have a choice where we live, some of those factors will have to take priority – for example, living somewhere that enables you to keep your job may trump living ‘anywhere as long as it’s on the ground floor’.

Ground floor availability

If you do decide that a ground floor flat is your priority, let’s circle back to availability of accessible housing stock. The Government recently announced a plan to spend £30 million that could lead to more than 17,000 new homes, but refuse to insist that a single one of them is built to strict accessibility standards.

Whether renting or buying, disabled people consistently face barriers – from bathroom door widths to hostile landlords. Let’s also not forget that in most town and city centres, the ground floor of apartment blocks is often designated commercial space.

British High street of shops with residential flats above
Ground floor flats in city and town centres are rare or can feel unsafe

Right to choose

Putting aside the practicalities of finding an accessible ground floor flat, disabled and older people should have the same right to choose where they live as non-disabled people. Why should a young disabled person be denied the chance to spend his early 20s enjoying ‘city life’ in a block with his friends? If an older couple chooses to downsize their house in a rural area, ditch their car and live in a block close to amenities, isn’t this a decision we should respect?

Of course, some disabled and older people would not feel safe living in high rise buildings. This was the case with many people who died in 2017 at Grenfell Tower and had spent years pleading with the Council to help them to move. Nobody should be forced to live anywhere they don’t feel safe and secure.

All residential buildings should be responsibly constructed to high levels of safety standards and the Government must urgently step in to fund their remediation work. We must design homes that are suitable for everyone in society, with comprehensive plans for evacuation from the outset. When this is not the case, people panic and we start hearing “well, disabled people shouldn’t be living here.” This reactionary and ableist mindset leads to segregation and harassment.

If you believe that segregation is not answer and that the real problem lies in the lack of inclusive design and building safety standards, please respond to the Government consultation by 19 July 2021.

Mythbusting PEEPs #4: “They’re only for wheelchair users”

There is a whole range of reasons why people may not be able to self-evacuate. A mobility impairment is just one.

Five stickmen in a row. Four are blue, one is red.
One in five people in the UK are disabled

There are over 14 million disabled people in the UK. That’s one in five of us. One in five of us are not wheelchair users. Other impairments will include hearing and sight, learning disability, being neurodivergent and mental health conditions. In fact, it is estimated that that 80% of disabilities are ‘hidden’, for example anxiety and epilepsy.

Questions that help us to consider if a person can self-evacuate include:

  • Can you hear the alarm?
  • Do you understand what that sound means?
  • Can you safely descend stairwells?

This will be particularly relevant to blind and Deaf people, those with learning disabilities or anyone who takes a little longer to process information.

We also need to remember those who are temporarily disabled, such as following surgery or an injury. A resident may be laying in bed in their flat for many weeks in a plaster cast.

Older white woman with short grey hair and a trenchcoat is smiling
Older people may not consider themselves to be disabled

46% of pension age adults are disabled. Age and disability overlap as many impairments are often linked with age, such as arthritis and hearing loss. It’s important to remember that many older people living with impairments do not consider themselves to be ‘disabled’. Like disabled people, older people must be encouraged to reflect on their ability to self-evacuate in discussions which are tactful, sensitive and give no suggestion that they cannot live independently. Otherwise it may be distressing and end in the person abandoning the process.

Finally, the burden of fighting for evacuation plans is exacerbating the health conditions of many disabled people. One disabled leaseholder’s post-traumatic stress disorder is being regularly triggered every time she asks her managing agent for an evacuation plan. To this day she cannot get their support to create one.

If you agree that everyone who cannot self-evacuate deserves the opportunity to talk through their options of how to escape a fire in their block, please respond to the Government consultation by 19 July 2021.

Mythbusting PEEPs #3: “You always need a buddy”

A PEEP is not just for people with mobility impairments. Neither does every disabled person need a buddy.

Four painting rollers painting green, red , orange and blue on a wall
Careful use of colour can massively improve accessibility

We asked Elspeth Grant, an expert in creating PEEPs, for a quick list of interventions contained in effective PEEPs that she has seen which do not involve a buddy:

  • Deaf or hearing loss: under-pillow vibrating pillow, door knock alert system, radio doorbells and assistance dogs
  • Visually impairments: use of colour to assist navigation of escape route, contrasting nosings and handrails, emergency lighting following the escape route and assistance dogs
  • Learning disabilities: voice recording fire alarms and regular practice
  • Autistic spectrum: reducing fire alarm levels and noise reducing headphones
  • Arthritis/older people: minimum pressure of doors to ensure closure (including hold-opens that close on fire alarm) and easy to open door handles
  • Everyone: clear instructions, water mist systems to reduce risk of fire and intelligent fire alarm which monitors if fire alarm triggered frequently
A stairwell in darkness, with a green glow-in-the-dark effect system that highlights door edges and signage
Emergency lighting is often high up where smoke usually diminishes its efficiency. This lighting and wayfinding system is via Lite4Life.

Sometimes, physical support from another person is needed but this doesn’t need to be massive drama. Too many disabled people are being denied a PEEP because they need support yet their landlord or agent won’t even discuss how this might work.

Phil Murphy, HRRB Fire Safety Consultant, says it’s wrong to assume that only employees can fulfill the role of a Trained Evacuation Assistant (TEA) and that, in fact, most people with a basic level of fitness can be trained in a couple of hours. “Research has proven beyond all doubt that helping each other in emergencies is what people instinctively do. Partners, live-in relatives, carers and neighbours are all most often very willing and able to be TEAs. Using the excuse that no employees are present is a poor one and, having been proved false, it is no longer acceptable.”

1980s cast photo from the TV show 'Neighbours
When good neighbours become good friends

Sarah is a wheelchair user living on the 13th floor of her block of flats where she has been told that the fire-fighting lift is defective and cannot be used for evacuation. Although she is supported by assistants on a 24-hour basis, they sometimes need to leave her to pop to the shop or just go outside for a break. She was touched when neighbours asked if they could be trained to use her evacuation chair, just in case her assistant gets fatigued, needs support or is out. “I suppose I shouldn’t have been surprised,” she says “as our block is a vertical village. When it’s snowing, I get texts from neighbours I rarely see asking if I need milk or anything. It makes sense that we naturally look out for one another in an emergency”.

If you agree that everyone who cannot self-evacuate deserves the opportunity to talk through their options of how to escape a fire in their block, please respond to the Government consultation by 19 July 2021.

Mythbusting PEEPs #2: “Disabled people prefer to stay put”

Says who?

This is, in fact, a classic example of institutions and non-disabled experts putting words in our mouths in order to make their advice and policies more palatable. It’s pretty bad to leave us behind when a fire is considered so dangerous that everyone is told to get out.

Let’s not fluff this up to make it look like our ‘choice’. It’s not a choice if we aren’t allowed to make an informed decision.

Disabled people are routinely advised that it’s our ‘safest’ option. Most of us do not question it, particularly if we are told this by people we trust such as our local fire service.

A wheelchair user is sitting on her balcony looking out
Georgie on the balcony of her flat. She has no evacuation plan.

Everyone in our group has persistently asked for a PEEP but virtually no-one has got one. That’s why Georgie co-founded Claddag – to raise awareness of the ways in which disabled people have been forgotten. Her block in Manchester was recently changed from a ‘stay put’ policy to simultaneous evacuation. “Those of us who can’t do so weren’t even considered. I have been refused a PEEP countless times. We can evacuate with others with the right support and/or equipment. We are talking about risk to peoples’ lives here – it’s not something trivial. Would able bodied people accept this? I doubt it very much.”

The building safety crisis has shown that many of us have a false sense of security living in our flats. Nearly half of those that lost their lives in Grenfell Tower were disabled. We do not want to stay put when non-disabled people are told it’s not safe to do so.

Faces of those who lost their lives at Grenfell Tower - mixture of ages, genders and ethnicities
Almost half of those who died in Grenfell Tower were Disabled people and children

Until disabled people are talked through their options and given financial access to tools needed to facilitate their evacuation, then a ‘stay put’ plan is not an informed decision. It’s not a choice.

If you agree, please tell the Government in a response to its consultation by 19 July 2021.

Mythbusting PEEPs #1: “You create a hazard”

Before we get into this one, we need to have an honest conversation about ableism. 

Woman pushing petite woman in evacuation chair down a stairwell. Disabled woman is looking a young person walk passed her
Everyone has the right to evacuate in emergencies

Ableism is discrimination and prejudice against disabled people.

Forcing a disabled person to ‘stay put’ whilst everyone else evacuates is saying that it’s acceptable for that person to stay within the zone of danger. This tells us that our lives are considered to be less valuable. To then further defend ‘stay put’ by suggesting that attempts to get us to safety creates a hazard for others is simply ableist. It’s shaming us into increasing our risk of death in order to avoid the possibility of hiddering the evacuation of non-disabled neighbours.

Every disabled person is different. Our circumstances, access barriers, abilities and support networks are different. However, here are some aspects of Sarah’s evacuation plan as an example.

Sarah lives on one of the top floors of a high rise building. She has recently discovered that she is no longer allowed to use her lift in an evacuation as it was not constructed to fire-fighting lift standards. Her ‘right to manage’ board (of fellow neighbours) supported her to create a PEEP within 48 hours of hearing about the lift.

Sarah transfers into her evacuation chair and leaves her chair inside her flat. The wheelchair does not block any exits or corridors.

Her neighbours have supported her to practice evacuating. Descending the stairs, with her Personal Assistant, neighbours can pass by. Her PA can brake and leave go of the chair at any point if this helps others to pass. Yes, they may need to walk single file around Sarah but there’s a bigger issue here: sacrificing a couple of seconds to give Sarah a chance to save her life or making her stay behind on the top floors until it’s maybe too late.

By the time Sarah transfers into the evacuation chair and approaches the stairwell, those that live on the floors above her will most likely have already made their way passed her floor anyway. Only the odd person who’s taking more time would need to pass her on the stairs.

Video clip of Sarah being transferred and descending the stairs with neighbours

This is Sarah’s plan and it won’t be suitable for others – just like many other effective PEEPs won’t be suitable for Sarah.

Local authorities, fire services, landlords and agents need to think very carefully about the morality of the ‘you cause a hazard’ argument. The pandemic has revealed countless policies which demonstrate that disabled lives are considered to be worth less, for example the use of ‘do not resuscitate’ orders without consent. Shaming disabled people to avoid a chance to save their lives is morally wrong and practically ignorant. It’s time to stop working from “no” and, instead, look for solutions. Our lives are of equal value.

If you agree, please respond to the Government consultation by 19 July 2021.

Channel 4 News: Councils have no evacuation plans for disabled people

Channel 4 News reported today on the stories of two disabled people, Georgie and Joe, who are being refused evacuation plans in the event of a fire. This is despite the fact that over 40% of those that lost their lives in Grenfell Tower were disabled.

In a Freedom of Information Act request, the report reveals that despite over 3500 disabled people living above ground floor, not a single one has been granted an evacuation plan by Bristol, Tamworth and Lewisham Councils.

Map of the UK highlighting three Councils - Tamworth, Bristol and Lewisham. Numbers of disabled people living above ground floor are 194, 3215 and 166 respectively. All have zero with an evacuation plan.

Credit: Channel 4 News
Channel 4 News graphic showing number of disabled people in three Councils without PEEPs

Thank you to Joe, Liz and Georgie for sharing your stories.

Home Office workshops: PEEPs Consultation

The Government is repeating a consultation on PEEPs for disabled people living in high rise buildings following a legal challenge by the family of a disabled woman who died in Grenfell Tower.

The consultation is currently open to responses but, in the meantime, the Home Office is hosting a series of workshops on the proposals. It is vital that those who are unable to self-evacuate attend these workshops and share our experiences and fears. They are being held on Microsoft Teams.

Workshop 1: 15 June, 2:30 to 4:30

Click here to join the meeting

Workshop 2: 24 June, 10am – 12:00

Click here to join the meeting

Workshop 3: 30 June, 2:30 – 4:30

Click here to join the meeting

Workshop 4: 8 July, 10am to 12:00

Click here to join the meeting

If you would like to learn more about our views on the consultation proposals, please contact us.