Author: Neil Armstrong

We are happy to have received some funding from the National Institute for Health’s School for Social Care Research (NIHR SSCR). The study will explore how disabled young adults who employ personal assistants (PAs) experience and understand the support they receive from the perspective of their sexual and gender identities.

The research will also investigate how PAs and social care services can be made more aware of disabled young adults’ support needs in relation to sexuality and gender. This will include looking at what information and support resources might help disabled young adults and their PAs talk about sexuality and gender as part of their care and support arrangements.

The research will be led by Ned Coleman-Fountain who is based at Northumbria University. Disability North in Newcastle-upon-Tyne, who are also part of the team, will support a study of the experiences and training needs of PAs. Co-investigators also include Alex Toft at Nottingham Trent University, David Abbott of the Norah Fry Research Centre at Bristol University, and Bryony Beresford from the Social Policy Research Unit at the University of York. An experienced researcher will be recruited into the team to support the study.

 The research team are committed to user participation in research. A project advisory group of disabled young adults will support the co-production of all elements of the study that build towards the research aims. A call will be put out shortly via social media for disabled young adults who are interested in getting involved in the project to get in touch.

Ned Coleman-Fountain (Project PI) said: “This is an opportunity to explore what is going on for young adults who employ personal assistants. Sexuality and gender are important parts of all young people’s identities, and we want to find out what can be done to improve social care in a way that ensures disabled young adults are able to live full lives. At this current moment of uncertainty, we hope the project can make sure that disabled young adults’ voices are heard on their experiences.”

Victoria Armstrong (Disability North) said: “As a user led organisation, Disability North recognise the value in exploring important issues relating to sexuality which often go undiscussed. This project will help us understand the issues more deeply and will lead to action to enrich the lives of disabled people employing PAs in the future.”

For more information on the research, you can contact Ned: edmund.coleman-fountain@northumbria.ac.uk

The government’s decision to further ease measures that have been protecting hundreds of thousands of disabled people from coronavirus since late March has left many of them “stunned and anxious”, say campaigners.

The 2.2 million people currently described as “clinically extremely vulnerable” have been told that initial changes, allowing them to spend time with more friends and family, will be introduced from Monday 6 July, while they will be able to stop shielding completely from the beginning of August.

The government’s shielding support package – including free deliveries of food boxes, and medicine deliveries by community pharmacies – will stop at the end of July, ministers said this week.

And those who were previously shielding and cannot work from home will also be told they can return to work from 1 August if that workplace is “COVID secure”.

But just as with the previous decision to ease guidance for shielders in late May, the government’s decision has been met by disabled people with distrust and concern, particularly as the prime minister also announced that the social distancing two-metre rule will be eased to just one metre from 4 July.

Fazilet Hadi, head of policy for Disability Rights UK, said many of those shielding had been left “stunned and anxious” by the government’s “one size fits all approach”.

She said: “For many, catching the virus could result in death or a serious diminishing of their quality of life.

“Why are people being asked to take this risk when we don’t have the evidence of the loosening of restrictions on the R rate [how infectious the virus is], or an effective test, trace and isolate service?”

She said the government had advised shielders they should still remain cautious because of the risk of severe illness, but at the same time was still reducing the social distance rule from two metres to one.

It is also removing the financial protection of statutory sick pay for those who cannot work from home, and removing free home deliveries of food parcels and medicines.

Hadi said: “Shielding has not been remotely comfortable for most people, but the one thing that it assured was the minimum risk of death from coronavirus.

“On the 1 August, people are being forced to choose between their life and their livelihood. This isn’t right.”

Vicky Foxcroft, Labour’s shadow minister for disabled people, who herself has been shielding at home during the pandemic, called for urgent clarity on the science behind the decision.

She said: “The government needs to provide clear risk assessments to ease anxiety, following awful communication to date.

“Questions remain around the timing of this easement, especially while the government is considering reducing social distancing to one metre and opening society up further.”

She questioned the prime minister about the decision on Tuesday, asking if he would commit to improving communication with shielded and disabled people, and passing on the concerns of DR UK that support for shielded people was being removed too quickly.

Boris Johnson appeared to ignore the question, telling Foxcroft the government wanted a situation where the number of cases was so low that the shielding programme “no longer needs to continue in its current way”, and adding: “Too many elderly, vulnerable people have been kept in close confinement for too long, and we must help them to a new way out.”

The grassroots disabled people’s organisation Bristol Reclaiming Independent Living (BRIL) said it was “very concerned” that the government’s plans had been introduced “against scientific advice and without any consultation with disabled and chronically ill people”.

Its members have told BRIL that advising people to stop shielding while relaxing other measures was “dangerous”.

BRIL pointed to calls from health leaders to prepare for a second wave of COVID-19, and it said many disabled people would continue to shield despite the government’s announcement.

A BRIL spokesperson said: “Disabled and chronically ill people – both those on the official list advised to shield and those who have been left off – have been forgotten.”

One BRIL member said: “I can’t understand how they can be changing everything all at once.

“The government’s priority seems to be getting people shopping, stopping sick pay and forcing people back into work, regardless of whether it is safe or not.

“The messages seem to be: ‘Tough it out – stop being wimps.’ It’s just cruel.

“Shielders are now being constructed as ‘cowards’ hiding from a ‘non-existent’ threat.”

Another member said: “It seems that regulations have been downgraded to ‘advice’.

“The government are washing their hands of any responsibility.”

Beth Richards, a researcher and actor with learning difficulties, said she had found government guidance complicated, and was disappointed that making information accessible had been left to charities and self-advocacy groups.

She said: “It’s like they don’t care about us.”

Disability Labour said the government’s decision was “extremely concerning” and showed again that “profit is being put before people”, adding: “Talking to our members, it seems that very many will not be altering their current habits and only going out when absolutely necessary.”

It pointed out that the virus was still “entrenched” in the UK and was still killing people, while there have been outbreaks in the meat processing industry, with the NHS in at least one region reportedly preparing for a second wave more than double the size of the first.

It warned that many people were disregarding advice to wear masks, and many disabled people cannot wear masks for impairment-related reasons.

It also warned of the “huge pressure” on disabled people to return to work, with concerns that those too much at risk from COVID-19 could be sacked or made redundant.

Kathy Bole, co-chair of Disability Labour, said: “Disabled people should be trusting the doctors and the scientists – not this government.”

Her co-chair, Fran Springfield, said: “I worry for those people who have been relying on food parcels being delivered; they will be forced out to shop and fend for themselves.

“As a nurse, I’m concerned that there is no news of a vaccine yet. Once that’s available and I’ve had my jab, then I’ll feel safe to go out again, in the way I did before lockdown.

“I don’t feel safe now and these latest announcements haven’t changed that.”

Disabled campaigner and retired Paralympian Chris Channon, who is on the “extremely clinically vulnerable” list, said he found the announcement “confusing”.

He said: “If we were considered vulnerable to the virus at the beginning of the crisis then we’re still very much vulnerable to it now.

“The truth is that the government now considers the rate of transmission is low enough to end the lockdown which obviously takes the pressure off the exchequer and the country can start functioning again.

“But again, the risk is still there and still very real and will continue to be so until an effective vaccine is developed and made available.”

Disabled campaigner Fleur Perry, who has also been shielding, said: “When we get to August, I’m going to look at the local and national data myself before making any decisions, and will probably err on the side of caution.

“Then I’ll gradually go to vital places, probably in full PPE [personal protective equipment] if it’s a medical setting.

“There does seem to be a lack of guidance which acknowledges those who need personal assistants or other forms of support.

“I have a team of more than five people who assist me with care needs 24/7 – does this mean I can safely meet with another five people? Probably not.

“I am concerned that there will be times when I’m expected to go everywhere and will need to explain that though shielding has ended, that doesn’t mean that the risk is zero and that I intend to take every precaution. But it’s got to be safety first, always.”

The disabled people’s organisation Disability North called for more reassurance for those who have been shielding.

Vici Richardson, Disability North’s community care and personalisation advisor, said: “We heard very clearly from the chief medical officer and scientific officer that the virus hasn’t gone away and there still needs to be caution.

“Many of those who have been shielding are understandably anxious about support being withdrawn and the shielding scheme being paused whilst we are still at a level three [pandemic alert level].

“We want to see understanding from employers and an assurance that workplaces will be COVID-19 secure and wherever possible people can remain working from home.

“There needs to be more transparent communication for those shielding on what happens if there are local spikes or a second wave.

“Support will need to continue until people feel ready and assured.

“We would urge anyone in this group to speak with the professionals involved with their medical care and get their advice.”

From 6 July, ministers believe that those who have been shielding will be able to spend time outdoors in a group of up to six people, while maintaining social distancing.

Those who are shielding and live alone or are single parents with children will also be able to mix with one other household, in any setting, from 6 July.

Although some support will be still be available – including priority for supermarket delivery slots and support from NHS volunteers and local councils – free deliveries of food boxes and medicine will stop at the end of July.

Ministers also say that those who have been shielding will be able to take part in activities like visiting shops and places of worship from August.

Although they will be told they should still continue to remain at home as much as possible, minimise contact with others outside their household, and frequently wash their hands, ministers say infections are now low enough for their advice for shielders to be “carefully and safely eased”.

On average, fewer than one in 1,700 people are estimated to have the virus, down from one in 500 four weeks ago, they said.

Health and social care secretary Matt Hancock said that “with infection rates continuing to fall in our communities, our medical experts have advised that we can now ease some of these measures, while keeping people safe”.

Dr Jenny Harries, the deputy chief medical officer, said: “The prevalence of the virus in the community is now lower and chances of getting infected are reduced, so we believe it is the right time to relax some of the advice so people can start to regain a degree of normality once more in their daily lives.

“People should continue to follow social distancing guidance when outside their homes, as well as frequently washing their hands, to minimise the risk of becoming infected.

“We will continue to monitor the evidence closely and adjust the advice accordingly if there are any changes in the rates of infection that could impact on this group.”

*For sources of information and support during the coronavirus crisis, visit the DNS advice and information page

25 June 2020. News provided by John Pring at www.disabilitynewsservice.com

At Disability North we have continued to work with Direct Payment employers throughout the North East during this challenging time. The need for support is still there and PAs are a vital part of supporting disabled people in our area. A few weeks ago I was approached by someone who needed to recruit a full team of PAs to cover a 24/7 package.  My first thought was how are we going to recruit in the middle of a pandemic, are people looking for jobs right now and do they want to go on the frontline?

We put an advert up and within a week we had 10 good applications. To date they have had 18 applications. I discussed with them how I could support to interview and we discussed the subject of video interviews as at the time our building could not be open to the public.

At this current time our recommendations are still to conduct interviews virtually, and I have done a lot of research on virtual interviews in order to provide advice on this. However it is not always possible for someone to make a judgement based on a video interview, some people do not have the technology and are not comfortable with the technology and in some cases it would just add too much pressure onto our employers. We understand that our employers do not have the luxury of being able to suspend recruitment as their support needs do not disappear during a pandemic if anything, they can be greater.

This week we have made the decision to open our building for employers who need to interview PAs in person or want our support to do virtual interviews. We will ensure we are complying with all the government guidance and social distancing will be in force. We are fortunate to have plenty of space. Employers will be informed of the procedures before hand and candidates will receive information on invite to interview so that they can then make an informed decision on whether to attend. Everyone will receive a letter to ask them that if they have symptoms or if they have been asked to isolate for whatever reason they must not attend the interview. We will offer video calls as alternatives as far as possible.

It has been a challenging time, but we are really pleased to be able to start to reopen some face to face work in supporting our employers.

Over the next couple of weeks we will have invited 20 potential PAs to interview either virtually or in person.

Our vice chair Lucy Reynolds is an experienced employer and she has recently used virtual interviews as a first stage in her recruitment process, she then used our building to interview a potential PA face to face and we are delighted that this was successful and the PA is now undergoing the safe recruitment checks:  https://vimeo.com/430725292

If you are based in the North East and looking for support in recruiting PAs or want to use our Recruitment Service please do get in touch on 0191 2840480 or directpayments@disabilitynorth.org.uk

19th June 2020. Vici Richardson, Community Care and Personalisation Adviser

Disabled people have questioned the government’s decision to ease the stringent guidance that was previously advising those shielding from coronavirus to stay inside for weeks on end.

In a surprise move at the weekend, ministers suddenly announced that those who have been shielding for the last 10 weeks – and who had been expecting to continue having to do so until the end of June at the earliest – could now leave their homes for outdoor exercise.

The move was announced despite the pandemic “alert level” remaining at level four, the same level as on 10 May.

The new guidance for the 2.2 million people seen as “clinically extremely vulnerable” stresses that they should continue to “take precautions” and “maintain strict social distancing”.

Those living alone can spend time outdoors with one person from another household, and this should ideally be the same person each time, according to the guidance, which is only advisory and applies to England.

But a succession of disabled people’s organisations and disabled campaigners have raised concerns about the government’s decision to update the guidance.

Svetlana Kotova, director of campaigns and justice for Inclusion London, said: “The situation does not suddenly become safer just because the government says so.

“We believe disabled people who are shielding should be very cautious following new advice and we know many feel they have no option but to continue to stay at home.

“With all that has happened to disabled people during this emergency, many of us are already finding it difficult to trust and follow the government’s advice, especially when it is issued out of the blue, without warning or consultation.

“This increasing lack of trust in government advice is shared more widely in society and we are concerned that the undermining of social distancing guidance will further impact negatively on people who are shielding or just beginning to venture out.

“Longer term there are many serious issues relating to inclusion, rights, discrimination and poverty for people who are shielding that need to be urgently addressed by this government, and the government needs to do this work with us not to us.”

The grassroots disabled people’s organisation Bristol Reclaiming Independent Living (BRIL) said it believed the government’s actions were placing people in danger.

A BRIL spokesperson said: “Due to the government’s failure to put people before business, and to listen to advice, a second wave of COVID-19 is now likely.

“The shielded population is being left on the wayside. We are worried about the safety of many disabled and chronically ill people.

“BRIL have not seen any evidence from the government that suggests that it is safe to accept or follow this new guidance.

“They have not consulted anyone at all, evidence has been ignored and the information is not in easy read or other accessible formats.”

BRIL said the guidance had been changed without warning or consultation, that GPs, hospitals and social care services had not been informed, while the government had ignored evidence from its own scientists, doctors and public health professionals.

BRIL said the guidance was “unclear, confusing and contradictory”, and added: “Despite their promises, they have changed ‘the rules’ for people at the highest risk, at the same time as efforts to keep people safe seem to be being abandoned.

“Schools are being pressured to re-open and people are being forced into workplaces, even though the number of people dying and catching the virus is still high.”

Jeff, who is shielding, has told BRIL he does not think the guidance should have been changed, and that he would not be altering his behaviour until he was sure there was not going to be a second wave of infections.

Caroline, a BRIL member, said she feared the move would mean “carers and people supporting people who were shielded could now be forced into prioritising their jobs over their family and friends’ safety”.

Disability Rights UK (DR UK) said any decisions had to be taken by the person who was shielding and not by the government.

Fazilet Hadi, DR UK’s head of policy, said the new advice appeared to be in “direct contravention” of guidance issued last month.

She said it was “imperative” that the government continued to give people the choice to continue to shield if they were advised to do so by their healthcare professionals.

She said: “The government has started to prepare the nation for a winding down of support services this autumn.

“This cannot be a blanket approach including those who still need to shield.

“Vital supply schemes for food and medicines, along with furlough, need to continue to be offered until such time as it is 100 per cent safe for vulnerable people to resume normal life activities.”

Vicky Foxcroft, Labour’s shadow minister for disabled people, who is shielding at home, said she also had concerns about the government’s advice.

She said it had not been reassuring that news of the change had been released at 11pm on a Saturday night, just a day before it came into force.

Foxcroft said she had not yet left her home, three days after the government altered its advice.

She said: “I want to hear scientists say it’s safe. Unfortunately, I’ve heard too many say that out of all of the changes [to ease the lockdown] the one they think is the worst is this one.

“I think we need to hear more from scientists. People want to make informed decisions.”

But she said she understood that others who have been shielding will want to take the risk and take some outdoor exercise, and she added: “I am lucky, I have got a garden. I can’t imagine what it is like if you haven’t got a garden.”

Disabled campaigner Fleur Perry was among those disabled people who have been shielding throughout the 10 weeks who said they did not believe it was safe to follow the government’s new advice.

She said: “I’m not going anywhere yet, as I don’t feel that it’s safe for me.

“I haven’t seen any evidence to justify this change, and although the number of cases is on a slow downward trend, we don’t yet know the impact of schools and businesses beginning to reopen.

“Some commentators have predicted a second wave, and I don’t want to be part of it.

“Also, the way we avoid a second wave is by not going back to business-as-usual too soon.

“By not visiting family and friends yet, I’m helping them to stay safe.

“I miss them, but I want this to be over, as quickly as possible, and so I’m going to carry on doing everything I can not to catch the virus or spread it.”

She said another safety concern was that various healthcare policies which appear to be discriminatory are still in place.

She is still waiting for NHS England to publish a new policy on hospital visitors so that it no longer discriminates against disabled people, following separate legal actions taken by Perry and fellow disabled campaigner Mark Williams.

She said: “If I suddenly became unwell, particularly during the second wave, I do not feel certain that I could access treatment safely on an equal basis with everyone else.

“I don’t want to increase my risk of being in a situation where I have to discuss legal arguments for my right to treatment from a hospital bed.”

Disabled campaigner and retired Paralympian Chris Channon – who has been self-isolating, although he is not in the group who have been told to shield – was another who said he would be ignoring the government’s advice.

He said: “I just don’t trust this government anymore.

“They released this announcement at the weekend without any scientific evidence or medical advice for specific conditions.

“All this when the infection rate remains high and the daily death toll is still in the hundreds.

“I think there will be a second wave and for that reason I’m staying in.”

Baroness [Jane] Campbell, a disabled crossbench peer, said she had “mixed feelings” about the new guidance.

She said it made it easier for some disabled people to take responsibility for their own lives and to “make a personal judgement call about when to go out and when not to”.

She said: “Nobody is forcing us to go out and about or meet another person.

“I can see the mental health benefits for those who live alone and feel a heavy burden of isolation.

“Personally, I am happy to go for a walk in the park or meet a friend in the garden.

“I am not happy to go shopping, or anywhere else that would require me or my personal assistant to touch anything somebody else has.

“Having read the scientific information, I am satisfied that it is a lot harder to catch the virus when outside in an uncrowded space.”

But she said she did not want the government to use the new advice as an excuse to deny disabled people the protective equipment they needed or other support, such as assistance with shopping or food parcels.

And she said she wondered why the government had suddenly changed its advice when it was previously assumed that she and others would have to shield for far longer.

She said: “What has changed their minds? The scientific advance or something more worrying?

“I don’t like to think that we are seen as the expendables. Like those in care homes…”

She added: “What really worries me, is children returning to school from today.

“Many personal assistants, including two of my own, have children.

“I can easily see the small ones bringing home the virus and then the parents passing it on to us.

“With up to two weeks before symptoms, it’s in the house before you detect it.”

Disability Labour said it was “both dismayed and frightened by the actions of Boris Johnson in ignoring the science and putting political expediency before people’s lives”.

Fran Springfield, its co-chair, was also another disabled campaigner to raise concerns about the return to school of many pupils this week.

She said: “Whilst we are now allowed out, in restricted circumstances, many of us are too frightened to leave our homes.

“The re-opening of schools has seen many parents reluctant to send their children back, because of the difficulties of ensuring that young children observe both social distancing and hygiene precautions.

“For parents with disabilities or those who have children or family members who are shielding, this risk of a child unwittingly bringing back COVID-19 from school is a risk too far.

“We have seen what has happened in care homes, no or little personal protective equipment, people discharged from hospital without being tested and many residents dying of COVID-19 who are not counted in the stats because of lack of testing.”

The disabled people’s organisation Disability North said the change in guidance had come at short notice.

Vici Richardson, Disability North’s community care and personalisation advisor, who blogged the day before the government announcement about her 17-year-old disabled son’s experience of shielding, said some disabled people she and colleagues had spoken to had discussed the shielding issue with their healthcare professionals and had “taken safe steps to access the outdoors” before the new guidance was issued.

She said: “Many felt comfortable doing this whilst the lockdown restrictions remained in place.

“Now we see pictures in the media of busy parks and beaches, many people are now understandably wary about how safe it is outside.

“Whilst we welcome advice that those in the shielded category can now leave their homes for some fresh air, we would advise that if anyone is not feeling comfortable about this to have a discussion with their healthcare professional.

“For anyone leaving their home we would strongly encourage them to follow the guidance on social distancing, avoid busy places and practice good hygiene.”

She was another to warn of the fear that, as larger parts of society opened up, those in the shielded category would be expected to return to work.

She added: “The government should be consulting and planning with disabled people and shielders on how best to ease these restrictions.”

Communities secretary Robert Jenrick defended the government’s move.

He said: “Those shielding from coronavirus have made huge sacrifices over recent months to protect both themselves and the NHS – they deserve our thanks and our support for their efforts.

“Incidence rates of coronavirus are now significantly lower than before these measures were put in place.

“That’s why we are focused on finding the right balance between continuing to protect those at the greatest clinical risk, whilst easing restrictions on their daily lives to make the difficult situation more bearable – particularly enabling the contact with loved ones they and we all seek.

“We will now be providing regular updates to the shielded to guide them through the next phase and we hope, to better and less restrictive times.

“In the meantime, we will continue to provide the support that the shielded in our communities need.”

*For sources of information and support during the coronavirus crisis, visit the DNS advice and information page

4 June 2020. News provided by John Pring at www.disabilitynewsservice.com