Coronavirus: Disabled people say ‘shocking’ new laws will strip away rights

Disabled people’s organisations (DPOs) say measures in the government’s emergency Coronavirus Act – which became law yesterday (Wednesday) – will “run a coach and horses” through their rights to social care.

They spoke out as MPs and peers debated, and then approved, measures that will now restrict rights to social care, the rights of people in mental distress, and the rights of disabled children to education and other support.

A campaign launched by Inclusion London saw more than 2,000 emails raising concerns about the bill sent to MPs in just two days at the start of the week.

Inclusion London said disabled people and DPOs had reacted with “deep shock and concern” to measures that will now remove councils’ duties to provide social care, limit the rights of disabled children to education, and place further restrictions on the rights of people in mental distress under the Mental Health Act.

Tracey Lazard, chief executive of Inclusion London, said the bill “runs a coach and horses through social care” and “strips disabled people of our rights to this support and removes from local authorities the duties to provide it”.

The social care measures mean key parts of the Care Act will now be suspended, according to one barrister, with another legal expert saying the government had amended the act by “stripping it bare”.

Dennis Queen, a spokesperson for Greater Manchester Coalition of Disabled People, said: “We need urgent action to protect disabled people from the coronavirus and support us to manage our lives – including if we live in an institution, or don’t have access to internet, or physical support.

“Instead, we are having our human rights reduced daily during this crisis.

“We’re horrified that the coronavirus bill will slash people’s right to social care support and humane mental health care, with these brutal new laws that weaken our rights under the Care Act.

“It seems no protections are in place to keep the usual health and social care system running during national crisis, which will lead to further loss of life.”

Queen added: “We wholly support the Greater Manchester Disabled People’s Panel call [this week, in a briefing to Greater Manchester mayor Andy Burnham] to maintain social care standards in Greater Manchester under the Care Act 2014 and not lessen them under the new bill.

“We ask our government to release money so our local authorities can provide this support.”

The Alliance for Inclusive Education said, in a detailed briefing on the act, that it feared the legislation would increase the number of disabled pupils being educated outside mainstream education.

Among the measures in the act, the education secretary is given the power to amend parts of the Children and Families Act (CFA) 2014 so that a local council only has to use “reasonable endeavours” to provide the education, health and social care needs named in a disabled pupil’s education health and care (EHC) plan.

The education secretary is also given the power to amend CFA so that a school would no longer have a duty to admit a disabled child if that school was named in the child’s EHC plan.

ALLFIE said it feared that “disabled pupils and students requiring education, health and care services will either not get it or may only receive the provision within segregated and institutionalised settings” if these duties from the 2014 act were suspended.

The National Survivor User Network (NSUN) added to the concerns it raised last week about measures in the act to relax safeguards in mental health legislation, and also highlighted the impact on disabled people with care and support needs.

It said it was concerned that the act was likely to have “a serious negative impact on the lives and rights of people who live with mental ill health, distress, or trauma, as well as disabled people with care and support needs and their carers, at a time when their needs may increase”.

Akiko Hart, chief executive of NSUN, said: “We recognise that this is a time of unprecedented national crisis for us all but are concerned that the needs of those who live with mental ill-health, trauma and distress will be pushed into the background.”

The act now allows someone to be sectioned under the Mental Health Act with the approval of just one doctor, rather than the current two.

It also allows the temporary extension or removal of some of the time limits in the Mental Health Act, if staff numbers become “severely adversely affected during the pandemic period”.

Disability Rights UK said the bill would in effect suspend the Care Act 2014 and “effectively free local authorities of their duties to provide social care support” under the act, and would only force local authorities to provide support in cases where the human rights of disabled people would otherwise be breached.

Experts, including public law barrister Steve Broach, warned there was a high threshold for proving such a breach of rights when a council fails to provide care and support.

Professor Peter Beresford, co-chair of Shaping Our Lives, said it had been clear from the beginning that the virus was most serious for older and disabled people and those with some long-term health conditions, and so these groups should have been given “particular attention and support”.

But, he said, “the opposite has happened” and “generalised policies have been adopted and little specific attention has been paid to vulnerable groups except where they are already in health or institutional settings”.

He said there had been “a confused and negative response to the groups most at risk”, with legislation introduced “which further restricts access to social care”.

Another national DPO, Disability Wales, was among organisations representing disabled people in Wales to raise concerns about the act.

They said the act represented “a real and present danger to the lives of disabled people” and would “effectively roll back 30 years of progress for disabled people” following years of “chronic under funding of social care which has resulted in a social care system already at breaking point”.

They said the legislation would “almost inevitably leave many thousands of disabled people without essential support or any rights to request this support” and would “put many lives at risk”.

Simone Aspis, director of the consultancy Changing Perspectives, said the act was “nothing more than another ideological attack on disabled people’s rights to life and live independently”, and accused the government of a “suspension of our rights to education, health and social care, liberty and access to justice”.

She warned that the legislation would make it easier for autistic people and people with learning difficulties to be detained in psychiatric hospitals and assessment and treatment units “indefinitely”.

Ju Gosling, co-chair of Regard, the national LGBTQI+ DPO, warned of the impact of the act on LGBTQI+ disabled people, who she said were “more likely than other disabled people to be dependent on local authorities for social care, because we are the least likely to have family support from partners, children and siblings, and least likely to be living in the areas we grew up and to have support from childhood friends”.

Tracey Lazard, from Inclusion London, said the government should have been “bold” about social care, rather than “shredding what’s left of our already broken social care system”, and she called for it to “take the necessary steps to ensure this critical service is fit for purpose”.

She said: “This means current duties to provide social care must be maintained and a massive injection of funding must now be made to keep the system going under what will be extreme pressure.”

Svetlana Kotova, Inclusion London’s director of campaigns and justice, added: “It is important that in this difficult time many disabled people stood together to protect our rights.

“Over the weekend more than 2,000 of us wrote to our MPs, many of whom raised our concerns so powerfully. We will continue to stand together and support each other.”

*Sources of information and support during the coronavirus pandemic include the following:

The Department of Health and Social Care

National Survivor User Network

Spinal Injuries Association

COVID Mutual Aid UK

Disability North

Disability Wales

Citizens Advice

26 March 2020


Coronavirus: MPs and peers pass ‘draconian’ and ‘life-changing’ bill

“Draconian” legislation that is set to have a “life-changing” impact on disabled people’s ability to access social care has become law, after being passed by parliament in just three days.

The Coronavirus Act was granted royal assent late yesterday (Wednesday) afternoon after it was passed by both Houses of Parliament, despite being described by a disabled crossbench peer as “a health and social care obliteration bill by a different name”.

In her widely-praised speech, Baroness [Tanni] Grey-Thompson also told fellow peers during the bill’s second reading in the Lords on Tuesday that the measures outlined were “draconian” and “life-changing for disabled people”.

She said the bill was “a temporary suspension of most of the duties contained in the Care Act” and asked if it was “any more than just a cost-saving exercise”.

She added: “Decisions will be taken by someone else about our usefulness in the next few months that we will have no control over.

“I am starting to worry that disabled people might be seen as expendable during this pandemic.”

She had driven to the House of Lords from her home in County Durham to take part in the debate on Tuesday, because of the bill’s “huge” impact on disabled people.

Her plans included disinfecting a spare wheelchair before she left and not using it again on her return home, changing her clothes before she left, and planning her route to ensure she touched as few surfaces as she could.

She said before the debate: “If this wasn’t a serious bill with massive consequences I wouldn’t be there.”

Following the debate, she said, she planned to self-isolate at home “because that is what the people who work in the NHS need”, adding: “I’d be dead without the NHS.”

Another disabled crossbench peer, Lord [Colin] Low, also raised concerns about some of the key measures in the bill, which he said posed a threat “to structures of social and community support, already seriously eroded by a decade of austerity”.

He said: “After all, the fact that coronavirus is on the scene does not mean that pre-existing needs for support have somehow gone away.”

Labour’s Baroness Thornton said the government’s plans would “roll back 30 years of progress for disabled people”.

She said: “While we may tolerate this for a short period, we cannot tolerate it for very long.

“All the years that we fought for disabled people’s right to social care are being eroded and undermined, along with their civil liberties and right to support.

“We need to put the [government] on notice that, particularly in this House, we will tolerate this for as short a period as possible.”

Lord Bethell, for the government, said there would be an “absolute and unavoidable obligation” on local authorities to “meet everyone’s human rights as an absolute minimum”.

He said the government was drawing up guidance for local authorities.

The previous day, MPs had debated the bill.

Health and social care secretary Matt Hancock had said the government’s goal was “to protect life and to protect every part of the NHS”, and that the bill had been “jointly agreed with all four UK Governments [and] gives us the power to fight the virus with everything that we have”.

He said the social care measures were to “make sure that when there is a shortage of social care workers, those who need social care to live their everyday life get it and can be prioritised ahead of those who have a current legal right to social care under the Care Act 2014 but for whom it is not a matter of life and death”.

But Labour MP Helen Hayes warned that the bill’s measures created “a significant risk that some vulnerable people will have care withdrawn as resources are prioritised and that some will be left in truly desperate circumstances”.

The most significant watering-down of the government’s original bill meant that there will now be a vote in parliament on whether its measures should continue every six months.

The powers granted by the act could otherwise last for up to two years, with ministers reporting to parliament every two months on how they have used those powers.

But the government rejected other proposed amendments, which were eventually withdrawn by crossbench and opposition peers and MPs, including the need for an independent body to monitor the impact of the legislation on the social care system.

*Sources of information and support during the coronavirus pandemic include the following:

The Department of Health and Social Care

National Survivor User Network

Spinal Injuries Association

COVID Mutual Aid UK

Disability North

Disability Wales

Citizens Advice

26 March 2020


Coronavirus: Anger over ‘terrifying and discriminating’ intensive care guidance

New guidance for the NHS on which coronavirus patients should receive intensive care treatment has heightened fears among activists that many disabled people will be refused life-saving treatment if they are admitted to hospital.

The guidance from the National Institute for Health and Care Excellence (NICE) says that all adult COVID-19 patients should be assessed for “frailty” when admitted to hospital, and that “comorbidities and underlying health conditions” should be taken into account.

Following alarm and outrage from disabled people and allies, the government body announced late yesterday (Wednesday) that it had produced an updated guideline.

But the new version has not eased all those concerns, with one disability campaigner warning that disabled people who need support would still be less likely to receive critical care if the guideline was followed and one grassroots group of disabled people saying that it was “not reassured” by the amendments.

It was the use of the CFS “frailty” scoring system that caused most alarm, with the guideline suggesting that those with a score as low as five – those seen as “mildly frail”, who often need help with transportation, heavy housework and medication (nine represents someone who is terminally ill) – might not be considered appropriate for critical care and might be steered towards end-of-life care instead if their condition deteriorated.

The guideline said that decisions to admit patients for “critical care” should be based on how likely they were to recover.

Among those raising concerns about the original version of the new guidance was disabled actor and activist Liz Carr.

She said on Twitter that the guideline suggested she and many other disabled people would be “pretty much denied [the] same access to ventilation/critical care support as non-disabled people based on the fact we require some assistance in our daily life, because we’re disabled”.

She said this was “terrifying and discriminating”.

When NICE said it was “very aware of the concerns of some patient groups about access to critical care” and that it understood “how difficult this feels”, another disabled activist, Dennis Queen, told the organisation: “It’s not about how we feel – you are denying our human rights.

“We pay [the] same taxes for this disgraceful unequal treatment.”

Another disabled campaigner, Angela Kennedy, said on Twitter: “It’s more than ‘difficult’: it’s justified concern that discrimination against disabled people – because we need support, assistance and reasonable adjustment to live with our disablement – will drive unlawful decisions to refuse us a right to life. Your guidelines caused that.”

Greater Manchester Coalition of Disabled People told Disability News Service (DNS) last night (Wednesday) that it was “alarmed that the government – via the NICE guidance – has confirmed that, when there’s competition for beds, the NHS will ration ICU care, so that many disabled people (especially elders) will be denied treatment, based on a scoring system.

“It’s also a much bigger group than those of us being told to protectively self-isolate.”

Mike Steel, from Bristol Reclaiming Independent Living (BRIL), said his grassroots group of disabled people was “highly concerned” about the NICE guideline, and the manner of its admission that the original version was flawed.

He said: “We have been shown with stark clarity the ease with which denying our most fundamental human right – the right to life – is normalised and reduced to being part of a ‘discussion’.

“We are not reassured by the amendment made to say that younger people and people with ‘stable long-term disabilities’ should not be assessed using the CFS, yet others can be.

“Categorising and dividing disabled and chronically ill people by age or personal care needs in order to decide who gets critical care is ableist and dangerous.

“The reality is, as a direct consequence of years of drastic cuts and a failure to plan by central government, frontline health staff will be put under immense and unfair pressure to make decisions about care.”

He said the guideline appeared to have been drawn up without the input of disabled people, and he added: “When we are excluded from decisions about our lives, not only are mistakes made, our very being is devalued.”

The concerns over the guideline came as more than 60 UN human rights experts, including Catalina Devandas Aguilar, the UN’s special rapporteur on the rights of persons with disabilities, warned in a statement* that action taken to cope with the COVID-19 crisis must address human rights issues and could not only be solved through public health and emergency measures.

They said: “Everyone, without exception, has the right to life-saving interventions and this responsibility lies with the government.

“The scarcity of resources… should never be a justification to discriminate against certain groups of patients.

“Everybody has the right to health.”

A disabled mother, who tweets at @Whovian242, told NICE on Twitter after the publication of the first version of its guideline: “This morning I read that according to these guidelines if I am assessed based on my care needs I won’t be eligible for critical care.

“With respect your comment ‘we understand how difficult this feels’ feels incredibly dismissive.”

Wheelchair dancer and consultant Shay Erlich added: “You have instituted a widespread tool and unleashed it for clinicians who will be making split second decisions in an overloaded system.

“Saying you have to take this advice in context in these circumstances only assures it won’t be.”

NICE said on Twitter that it accepted that the frailty scoring system was “not perfect” and so it recommended that doctors should “take any decisions about care in conjunction with patients and their carers where possible”.

It also said it welcomed clarification by the NHS Specialist Clinical Frailty Network (SCFN) that the frailty scoring system should not be used to assess certain groups, which it later said were “younger people, people with stable long-term disabilities, learning disabilities, autism or cerebral palsy”.

After publishing the updated guideline last night – following an update on using the CFS by SCFN – NICE said its new version included these clarifications and “the need to consider additional patient factors when interpreting the CFS score”.

The European Disability Forum (EDF), an umbrella organisation of disabled people across Europe, spoke out this week about reports of discriminatory medical guidance for the COVID-19 pandemic.

EDF said it was “extremely worried” about such reports coming from “some countries”.

It later told DNS that it had spoken out due to concerns raised by activists in the UK and other countries, including Sweden and Ireland.

It added: “In countries where healthcare professionals will not be able to provide the same level of care to everyone due to lack of equipment and underfunding of the healthcare sector, medical guidelines need to be non-discriminatory and follow international law and existing ethics guidelines for care in the event of disaster and emergencies.

“These are clear: persons with disabilities cannot be discriminated against.”

An EDF spokesperson added: “We believe that countries need to involve persons with disabilities and their organisations when writing these guidelines.”

Maureen Piggot, a member of EDF’s executive committee, said last night: “I welcome the clarification of the NICE guidelines, but it does not go far enough.

“The UK needs to follow the UN Convention on the Rights of Disabilities and explicitly ensure that there is no discrimination against persons with disabilities – this includes healthcare guidelines that provide equal access to life saving support.”

The Reclaiming Our Futures Alliance (ROFA) said this week that it was “deeply concerned” about the “eugenicist rhetoric that has been used to suggest that disabled people will have less access to medical treatment and equipment if they fall ill due to or during the pandemic”.

ROFA – whose members are all disabled people’s organisations and include Inclusion London, Disabled People Against Cuts, The Alliance for Inclusive Education, People First (Self Advocacy), Sisters of Frida and Equal Lives – called on the government to “ensure that disabled people are not discriminated against in the response to COVID-19”.

The NICE guidance added to concerns raised by last week’s DNS report about an NHS consultant who appeared to suggest in an open letter that he and his colleagues would not attempt to resuscitate many older and disabled people if they became seriously ill with coronavirus.

Cardiff and Vale University Health Board, which runs the hospital where the consultant works, has again refused to clarify his comments.

Instead, it issued a statement in which it said that every individual patient was different and that care plans “will depend on their individual circumstances where the most appropriate treatment will be offered based on their needs”, while it said the letter “was written to show the compassion and care NHS staff can offer during such a difficult period”.

*Here is the first part of the UN statement: “Everyone, without exception, has the right to life-saving interventions and this responsibility lies with the government. The scarcity of resources or the use of public or private insurance schemes should never be a justification to discriminate against certain groups of patients.

“Everybody has the right to health. People with disabilities, older persons, minority communities, indigenous peoples, internally displaced people, people affected by extreme poverty and living in overcrowded settings, people who live in residential institutions, people in detention, homeless people, migrants and refugees, people who use drugs, LGBT and gender diverse persons – these and other groups need to receive support from governments.

“Advances in biomedical sciences are very important to realize the right to health. But equally important are all human rights. The principles of non-discrimination, participation, empowerment and accountability need to be applied to all health-related policies.”

**Sources of information and support during the coronavirus pandemic include the following:

The Department of Health and Social Care

National Survivor User Network

Spinal Injuries Association

COVID Mutual Aid UK

Disability North

Disability Wales

Citizens Advice

26 March 2020


Coronavirus: Employers of PAs still await government guidance after nearly two weeks

The government has failed to publish guidance to help disabled people survive the coronavirus pandemic if they use direct payments to employ personal assistants (PAs), nearly two weeks after ministers provided advice for the wider social care sector.

It is now almost a fortnight since the Department of Health and Social Care (DHSC) finally produced guidance for the social care sector on 13 March.

But that guidance was aimed at service-providers in the residential care, supported living and home care sectors, and not at individual disabled people who employ their own care staff.

Despite repeated calls for the government to produce guidance aimed just at disabled people who employ their own PAs, no such advice had been published by this morning (26 March).

Last week, one disabled activist and PA employer accused the government of abandoning disabled people who employ their own PAs.

It is also nearly two weeks since the disabled crossbench peer Baroness [Jane] Campbell wrote to care minister Helen Whateley (on 13 March) to ask for the government to provide detailed information to assist disabled people with high support needs who employ their own PAs.

In an interview with BBC News on Tuesday, she repeated concerns raised last week by Disability News Service (DNS).

She told the BBC: “The problem is that we are not attached to any agencies, so basically we are on our own.

“We are employers and we have to put in place our own safety mechanisms.”

She told the BBC that she had yet to receive a reply from Whateley, although she has not been able to access her parliamentary email account since Sunday, so it is possible the minister has replied to her this week.

Mark Williams, from Bristol Reclaiming Independent Living (BRIL), said many of his members were “very concerned” about the lack of information for employers of PAs; such as what to do if they are their PAs become ill; whether PAs have the right to refuse to work; what equipment disabled people who employ PAs can buy with their direct payments; and what their rights are as employers of PAs.

Last week, DNS reported how the UN’s special rapporteur on the rights of persons with disabilities had warned that little had been done to protect the rights of disabled people across the world during the pandemic.

This week, DNS asked DHSC again why there had been no coronavirus guidance published for disabled people who use direct payments to employ their own PAs.

DNS also asked how disabled people in this situation would be able to secure vital supplies of personal protective equipment for their PAs, and why Whateley had not yet responded to Baroness Campbell’s letter.

Last week, DHSC failed to answered DNS’s questions, and it had again failed to do so by noon today (Thursday).

DHSC told the BBC in a statement that it recognised the concerns among those receiving support from PAs and would do everything it could “to ensure local authorities continue to provide care”.

Baroness Campbell told DNS this afternoon that she believed disabled employers of PAs would “have to look around and source guidance from here and there” in the absence of government guidance.

She said: “Some local authorities are doing better than others in terms of identifying and contact PA employers, offering guidance and some support.

“For instance, today I was sent a form to order personal protective equipment from my social services department.

“It’s all a bit piecemeal and certainly not aimed cohesively at the 75,000 disabled people who directly employ their own PAs.

“However, given the situation is so unprecedented, I would suggest disabled people do what they always do so well, and that is help and support one another, by information exchange, peer support and any other tips that will help get us through.

“I say this because it’s pretty clear that local clinical commissioning groups and local authorities are under enormous pressure to cope with the staff available to them to support those already in the system and that is not going to change until the 500,000 volunteers are organised and trained enough to provide emergency support when needed.”

The Penderels Trust, which provides support for about 15,000 users of direct payments in England, has produced its own information, with a “frequently asked questions” document (PDF) and a factsheet (PDF) to help PA employers prepare for a situation in which they or their PA should fall ill or need to self-isolate.

*Sources of information and support during the coronavirus pandemic include the following:

The Department of Health and Social Care

National Survivor User Network

Spinal Injuries Association

COVID Mutual Aid UK

Disability North

Disability Wales

Citizens Advice

26 March 2020


Coronavirus: Disabled woman fears benefits could be stripped while she fights COVID-19

The Department for Work and Pensions (DWP) has refused to say whether it could strip out-of-work benefits from disabled people who are fighting coronavirus while trying to meet strict deadlines for assessment of their eligibility.

DWP’s refusal to clarify the situation came after Disability News Service (DNS) was contacted by a 41-year-old woman with highly active MS, who has been “very unwell” for two weeks with COVID-19-like symptoms.

She was unable to meet this week’s deadline to return her work capability questionnaire because she had earlier been unwell with a kidney infection and now has suspected coronavirus.

Even without the illness, she would need to self-isolate and so would not have been able to photocopy the supporting medical evidence or post the form to DWP in time for the deadline she had been given of Tuesday this week (24 March).

She has been unable to confirm if DWP will take account of her situation, and that of many other disabled people who are now caught in the middle of an employment and support allowance (ESA) assessment or reassessment process.

DWP announced this week that it was suspending all new reviews and reassessments for disability benefits for three months, but the announcement does not say what the position is for claimants if their assessment process has already begun, like hers.

Rebecca*, who is on immunosuppression drugs and has been told by her GP she is likely to have COVID-19, said she fears her ESA will now be stopped because she was unable to return her completed paperwork by the deadline.

Because she is taking immunosuppressants, she is one of the 1.5 million people who are at higher risk of severe illness if they contract coronavirus and who were told by the government this week that they should stay at home for at least 12 weeks.

She contacted Jobcentre Plus before this week’s announcement by DWP on suspending new reviews and reassessments, but she was told they could not help.

Now she is waiting to see whether she will have her ESA stopped.

A DWP spokesperson refused to comment on the situation Rebecca and many other disabled claimants face, other than to point DNS in the direction of the announcement on new reviews and reassessments and to recommend that she “gets in touch with DWP asap to discuss”.

When DNS asked for clarity on whether the DWP announcement applied to situations like Rebecca’s, where a reassessment was already underway, he said: “Nothing further to add at this point, I’m afraid.”

Rebecca, who also receives personal independence payment at the enhanced rate for both daily living and mobility, said: “I feel like I’ve been forgotten, and the current situation is only amplifying my stress during this unprecedented time.

“I’m doing my best to manage on my own, but this lack of clarity is causing me to fear the loss of support when I need it most.”

*Not her real name

**Sources of information and support during the coronavirus pandemic include the following:

The Department of Health and Social Care

National Survivor User Network

Spinal Injuries Association

COVID Mutual Aid UK

Disability North

Disability Wales

Citizens Advice

26 March 2020


Coronavirus: Lack of engagement with DPOs ‘has led to bad policies’

The government is facing claims that its continuing and repeated refusal to consult with disabled people’s organisations (DPOs) has contributed to its failure to protect disabled people’s rights in responding to the coronavirus crisis.

Successive governments since 2012 have been criticised for their failure to engage constructively with DPOs.

Members of the Reclaiming Our Futures Alliance (ROFA) wrote to the minister for disabled people this week to question his failure to engage with them and other DPOs in drawing up the government’s planned new disability strategy (see separate story).

But Disability News Service (DNS) has been told that the failure to engage with DPOs has also adversely affected the way the government has handled the coronavirus crisis, leading to a series of attacks on disabled people’s rights, particularly in social care, education and mental health (see separate stories).

Mark Harrison, a member of the ROFA steering group, said the government’s failure to consult with DPOs over its response to the coronavirus pandemic had led to “bad” policies.

He said: “If you don’t involve the objects of policy in developing policy then you get bad policy.”

ROFA’s members include Inclusion London, Disabled People Against Cuts, The Alliance for Inclusive Education, People First (Self Advocacy), Sisters of Frida and Equal Lives.

Harrison said there had been “no meaningful consultation” with DPOs in England since 2012, which meant the government was missing out on “a wealth of expertise across all impairments and all the diversity of the disability community”.

One of the areas that has apparently suffered from the lack of co-production, he said, has been the government’s failure to publish guidance for disabled people who use direct payments to employ their own personal assistants (see separate story).

He pointed to the failure of care minister Helen Whateley to respond to a letter from the disabled crossbench peer Baroness [Jane] Campbell on the issue, and he added: “They are not even talking to disabled peers, let alone representatives of DPOs.”

ROFA wrote last week to the minister for disabled people, Justin Tomlinson, to ask why he had not replied to a previous ROFA letter from mid-February that questioned why he had not engaged with the alliance and other DPOs on the government’s new disability strategy.

This, says ROFA, is a breach of the UK government’s commitment to engage with DPOs under the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

Harrison said the failure to respond to the first letter showed that the government’s “contempt for DPOs” and for UNCRPD had not changed.

He said: “Where there’s a will, there’s a way, but with this government, as with previous governments since 2010, there isn’t any will.”

Greater Manchester Coalition of Disabled People (GMCDP) is another DPO that has raised concerns about the government’s lack of engagement with disabled people on its strategy for fighting the pandemic.

GMCDP said yesterday (Wednesday) that disabled people “need our equality upheld and to be consulted and have co-working on all government strategies about us”.

Fazilet Hadi, policy manager for Disability Rights UK, also raised concern about the lack of consultation with DPOs.

She said: “There has been no consultation before laws or guidance is produced and to some extent this is understandable given the pace of change. However, mistakes are being made.

“We fully understand that government and health and social care bodies need to act quickly during the crisis but as required by the UNCRPD it is essential that they consult with organisations led by disabled people when shaping new laws, guidance and emergency schemes.

“New forms of rapid consultation should be developed.”

Mike Steel, from Bristol Reclaiming Independent Living, said many disabled people were particularly concerned about the lack of advice from central government on COVID-19-related issues.

He said: “We share the concerns of others that the government has left out Deaf, disabled, chronically-ill people and people with mental health difficulties from planning and producing information, and call on the government to honour their duties under the UNCRPD to directly involve and consult with us.”

Asked by DNS about engagement with DPOs on coronavirus planning and the national disability strategy, a Department for Work and Pensions spokesperson said: “The government is strongly committed to ensuring that disabled people have a big say in determining our forthcoming national strategy, which is why we are working with disabled people and disability organisations as part of its development.

“We also intend to begin face-to-face engagement on national, regional and local levels as soon as wider circumstances allow.”

*Sources of information and support during the coronavirus pandemic include the following:

The Department of Health and Social Care

National Survivor User Network

Spinal Injuries Association

COVID Mutual Aid UK

Disability North

Disability Wales

Citizens Advice

26 March 2020


Minister’s silence over lack of engagement with DPOs on disability strategy

Disabled people’s organisations (DPOs) have asked the minister for disabled people to explain why the government is failing to consult with them on the development of its new cross-government disability strategy.

The Reclaiming Our Futures Alliance (ROFA) said it had not been consulted itself and was not aware of any other DPO that had been approached by the government.

Instead, it said, the government appeared to be discussing the strategy – due to be published later this year – with the big disability charities and regional forums.

It said this was “deeply disappointing” and a breach of the UK government’s commitment to engage with DPOs under the UN Convention on the Rights of Persons with Disabilities.

ROFA pointed out in its letter to Justin Tomlinson, the minister for disabled people, that he had not yet replied to a letter ROFA sent him a month ago, which itself requested “urgent engagement” on the strategy.

ROFA – whose members include Inclusion London, Disabled People Against Cuts, The Alliance for Inclusive Education, People First (Self Advocacy), Sisters of Frida and Equal Lives – called on Tomlinson to pause work on the strategy for three months so he could have “specific discussions” with ROFA and DPOs about the best way to engage with disabled people and their organisations.

In the letter, ROFA also detailed a series of measures that need to be introduced urgently during the COVID-19 crisis, in areas such as social security, health and social care.

These include calls for an immediate end to charging for social care; increased funding for disabled people who use direct payments to fund their support; and funding for local DPOs to provide advice and support services.

It also includes calls for COVID-19 advice for disabled people who are seen as being “at risk” because of their health condition; regular testing for disabled people and social care staff; and for the government to ensure Access to Work support is easily available for disabled people working from home during the crisis.

A Department for Work and Pensions spokesperson said: “The government is strongly committed to ensuring that disabled people have a big say in determining our forthcoming national strategy, which is why we are working with disabled people and disability organisations as part of its development.

“We also intend to begin face-to-face engagement on national, regional and local levels as soon as wider circumstances allow.”

26 March 2020


Benefit assessment companies ‘have made almost no progress’ on safeguarding

The three companies that carry out disability benefit assessments for the government have made almost no progress in the last year on alerting local authorities to concerns about claimants whose safety is at risk, according to a disabled campaigner.

Last year, freedom of information responses from more than a third of councils across England, Scotland and Wales showed that Atos, Capita and Maximus had made just four safeguarding referrals to those local authorities over the previous three years.

Now a fresh series of freedom of information requests has shown the three outsourcing giants appear to have taken barely any notice of those concerns.

Maximus healthcare professionals assess eligibility for employment and support allowance, while Capita and Atos carry out personal independence payment (PIP) assessments, and all of them carry out hundreds of thousands of face-to-face assessments every year.

But despite repeated warnings about the need to inform social services departments when there are clear and significant concerns about a claimant’s safety or welfare, they issued a total of just two referrals each during 2019 and the first month of 2020 across 89 councils.

The figures have been compiled by former safeguarding expert Mike Owen, and they relate to the 89 local authorities that have so far responded to his freedom of information requests.

This is nearly half of the local authorities across England, Wales and Scotland with social services responsibilities.

He said it was clear the three companies were “not doing enough” to safeguard the claimants they were assessing.

A Maximus spokesperson said in a statement: “We regularly make safeguarding referrals to GPs and the appropriate authorities, in line with our safeguarding policy.

“All of our doctors, nurses and physiotherapists are trained to identify safeguarding concerns and refer them appropriately.

“We do not recognise the figures that Disability News Service has provided, which only cover a fraction of local authorities and do not include referrals to other authorities.”

Owen said it was not appropriate to refer safeguarding concerns to a claimant’s GP because it could delay any urgent action.

Capita refused to comment on the new figures.

Atos said in a statement: “We take the safety of claimants seriously and follow DWP guidance which is to alert their GP to any concerns we identify.”

It was unable to point to this guidance by noon today (Thursday), after Owen questioned whether this claim matched the contents of DWP’s safeguarding guidance.

DNS reported last year that DWP guidance says that if a claimant who is at greater than normal risk of abuse or neglect “faces clear and significant risks to their welfare or safety”, staff should “volunteer information which is directly relevant to the issue of concern to Social Services, Social Work Department in Scotland or the police, as appropriate”.

Atos claimed later this week that it had made five referrals between December 2019 and March 2020 to social services, which appear to be figures covering the whole of England, Wales and Scotland (about 200 councils), although it has declined to clarify this.

Last year, Owen’s figures showed the Department for Work and Pensions (DWP) itself made referrals to just 25 councils over three years (out of the 80 councils that responded to his questions).

The latest figures show an improvement, with 32 of 89 councils receiving at least one safeguarding referral in 2019 and the first month of 2020.

In total, there were an estimated 152 safeguarding referrals by DWP to the 89 councils in 2019 and January 2020 (compared to 111 over three years last time)*.

In some areas, councils received a significant number of referrals from DWP, including 33 to Sunderland City Council, 22 to Sheffield City Council and 17 to Essex County Council.

DWP admitted last year that it had kept no central record of how many safeguarding referrals it made to local councils, because they were “made locally by staff on a case by case basis”.

DWP also pointed out last year that it did not know how or if each council recorded such data and therefore the freedom of information responses could not be an accurate portrayal of how many referrals were made.

And it said it had “clear guidance on making referrals to local authorities for all DWP staff dealing with claimants, to ensure vulnerable claimants get the support they need”.

Despite the improvement, Owen said he believed DWP had to do much more and that there was still a need for it to collate information on safeguarding referrals centrally to ensure accountability and transparency.

Because DWP is carrying out numerous urgent changes to the social security system, as a result of the coronavirus pandemic, and because it appears to have shown some improvement during 2019, DNS did not ask it for a fresh comment this year, but it did alert the department to this story.

*Exact figures are not possible as a small number of councils declined to give precise numbers if they had received a low number of referrals

26 March 2020


News provided by John Pring at