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30th June 2022

 In this week’s edition:

  • Disabled people are playing their part in defending their country, say Ukraine activists
  • DPO gives stark warning to disabled people about Covid pandemic
  • Covid inquiry ‘must examine catastrophic impact of pandemic on disabled people’
  • Mayor’s ‘ultra low emission zone’ plans ‘will impact tens of thousands of disabled people’
  • Disabled activists will push for changes to draft mental health bill that ‘breaches rights’
  • DWP yet to sign claimant deaths legal agreement with watchdog
  • ‘Huge barrier’ of care charges is forcing disabled people into poverty, peers are told
  • Other disability-related stories covered by mainstream media this week


Disabled people are playing their part in defending their country, say Ukraine activists

Disabled activists in Ukraine have been kidnapped and killed, residential institutions have been shelled, and Deaf people have been unable to escape to shelters because they cannot hear the air raid warnings, a conference has heard.

Representatives of leading disabled people’s organisations (DPOs) from Ukraine described the barriers that disabled people have faced during the war with Russia, but also how they had played their own part in defending their country.

Three Ukraine DPOs were taking part in an online conference organised by disAbility Cornwall & Isles of Scilly on Friday (24 June).

Larysa Bayda, from the secretariat of Ukraine’s National Assembly of People with Disabilities (NAPD)*, an umbrella organisation of DPOs, said disabled people were facing many challenges in Ukraine.

NAPD does not know how many people with learning difficulties or mental distress are trapped in institutions in occupied areas, she said, or how to make sure that aid reaches other disabled people who have had to stay in occupied cities or those affected by hostilities.

And there are no figures to show how many disabled people have been killed during the war.

Bayda told the conference: “We have numerous challenges every day in Ukraine. Speaking to you I can hear the air raid alarm, but we are so used to that now.

“I live in Kyiv and sometimes we don’t even go down to the shelter. We are getting accustomed to this.”

She said they had heard accounts of blind people who had been left “completely disorientated” during air raids because they didn’t know which direction rockets were coming from and didn’t know where to run or what to do.

She described how “institutions for people with disabilities were shelled from tanks, how families were killed in their cars, how activists with disabilities were kidnapped and killed”.

But she said that disabled people were not just “observers” of the war.

She said: “Each of us in our own place are now doing everything we can to win this war.

“Many people with physical disabilities, amputees, took up arms; people with disabilities work in kitchens to cook meals for soldiers; they make camouflage nets; everyone is trying to do something in Ukraine to bring the victory closer, this long-awaited victory.”

She said that one of her Deaf colleagues rode around the suburbs of Kyiv on his bicycle to bring food to disabled people who were living alone, even though he could not hear the air raid warnings.

Bayda also described how NAPD had accumulated “invaluable experience” during the conflict on the need for accessible air raid shelters and for accessible information at local, regional and national level.

Disabled people in smaller towns and villages without the necessary technology “don’t have fully accessible information and they won’t have access to humanitarian aid”, she said.

Many disabled people have been housed together in groups because of the shortage of social workers and other professionals, she added.

Viktoria Nazarenko, NAPD’s general secretary, said its current priority was to respond to the needs of disabled people who are fleeing from the war or who have been forced to stay in their own homes “because they are not able to flee”, and to support the reconstruction of Ukraine.

She said: “The war requires great focus and commitment from our part and all DPOs in Ukraine to refocus their activities.”

This includes providing humanitarian aid, medication, hygiene products, financial assistance, and assistance with evacuating, including for those who need to leave the country.

NAPD has also set up shelters at buildings run by its DPO members, and some of them have provided temporary accommodation for up to 500 disabled people and their families for various periods of time.

Svitlana Demko, who leads the DPO “Open Hearts” Association for Rights Advocacy and Assistance to People with Disabilities, based in the central-west of the country, spoke of her organisation’s work evacuating disabled people from Ukraine to the Netherlands, Denmark, Poland and Germany.

They have so far taken 135 people, aged between three months and 81 years, in six groups.

She described the barriers they faced, with inaccessible border crossings, having to use blow-up mattresses on the floors of their buses for some of the disabled people they were evacuating, and the impact caused by the stress of the journey on the health of some of those who were being evacuated.

On one of the trips, they had one nurse for four buses.

Open Hearts also runs six accessible shelters, three of which are permanent and three which operate as transit shelters for those moving on to other locations.

They have also started a new programme, Coming Back Home to Ukraine, which accommodates families who have children with high support needs.

The programme allows families to leave their children at the shelter for a fortnight so they can return to where they lived before the war “to see in what state their homes are”.

Valentyna Dobrydina, leader of Chernivtsi Regional Organization of People with Disabilities, said her organisation had campaigned before the war to protect disabled people’s rights.

It is based in a region which is now hosting many people who have been internally displaced by the war.

Many of her members are wheelchair-users, as she is, and often are unable to move to air raid shelters when the alarm sounds.

As part of a national NAPD campaign, her DPO has been lobbying the government to improve access to air raid shelters since the start of hostilities with Russia eight years ago.

Many disabled people who were displaced are now being housed in holiday resorts or mental health institutions, but many of those institutions are now “over-populated” and under-staffed.

Many of the disabled people were brought in by train and taken to the holiday resorts by ambulances queuing up at the railway station.

Her organisation is now seeking funding from international organisations to pay for these services, but she said that aid is running low and many medicines are in short supply.

NAPD was set up in 2001, 10 years after Ukraine won independence, and it represents about 120 DPOs across Ukraine, and is a member of the European Disability Forum.

Thanks to NAPD’s campaigning efforts, all draft laws and statutory documents that affect disabled people’s rights must be reviewed by disability organisations before they can be approved by the Ukrainian parliament, although most of these documents currently relate to border crossings and other war-related issues.

Nazarenko said Ukrainian laws were mostly in line with the UN Convention on the Rights of Persons with Disabilities, but the problem was that they are “not followed” in practice.

More than half of disabled people in Ukraine live below the poverty line, she said, surviving on £60 a month in disability benefits.

Their priority is to strengthen the influence of DPOs on decision-making processes.

But they have also seen a trend in the last few years of organisations registering as DPOs when they are run by non-disabled people.

She said these organisations were “pseudo protectors” of disabled people, with staff who speak good English, communicate well with organisations in Ukraine and abroad, and are skilled in securing funding from public bodies and international donors.

These organisations “create confusion”, she said, so it was “important” to ensure “formal status” for genuine DPOs.

Bayda stressed how DPOs in Ukraine have learned from colleagues in the UK in areas such as inclusive education, and “are following your websites to learn about your work”.

She added: “When we went on a study trip to England, we saw how much you have achieved, for example your museums are accessible for people with disabilities, in Ukraine they are not, how you achieved accessibility, we learned how you organised rallies and demonstrations.

“You also have accommodations for people who use guide dogs, so we continue to learn from you and this meeting today is learning for ourselves and for you as well.”

Dr Theo Blackmore, who organised the conference for disAbility Cornwall, said the presentation from the Ukrainian DPOs had been “very moving” and “very harrowing”.

He said: “It’s not an experience that we would wish on anyone, but I think the message that comes to me through all of your work is your resilience and your ability to change and your ability to adapt to meet the needs of disabled people locally.

“That’s incredibly strong and powerful and I think the work that you’re doing is amazing.

“The work you’re doing to get disabled people to places of safety, to help support disabled people, to provide social contact for disabled people, is absolutely incredible.”

Mark Harrison, a member of the steering group of Reclaiming Our Futures Alliance (ROFA), gave a presentation to the conference on research he carried out for ROFA, Inclusion London, and seven other regional DPOs, which was published last year.

The research had sketched out a 10-year plan to tackle the inequality, marginalisation and discrimination that was blighting the lives of millions of disabled people, and made the case for an “independent, sustainable, powerful” network of regional DPOs in England.

Harrison told the conference that he was “very proud” of what the DPOs were achieving in Ukraine but was also upset by the war, having worked in Ukraine post-independence, working on deinstitutionalisation and supporting the development of local organisations.

He said: “The discrimination we face, the barriers we face, the oppressive regimes, that change starts from us as disabled people, we are the agents of change, no-one else is going to do it for us. It’s really important that we fight for that change.”

He was asked by NAPD during the event to deliver a presentation at an event being run for Ukrainian DPOs.

*To donate towards NAPD’s work, visit its website. It uses the funds to provide targeted financial assistance to individual disabled people; repair damaged homes; support care facilities with funding for food, medicine and hygiene products; and for its programme in western Ukraine to provide accessible gynaecological examination rooms and facilities

30 June 2022



DPO gives stark warning to disabled people about Covid pandemic

A disabled people’s organisation (DPOs) has delivered a stark warning about the continuing seriousness of the Covid pandemic, and its impact on disabled people and DPOs.

Buckinghamshire Disability Service (BuDS) has been working to inform disabled people in Buckinghamshire and wider afield about the virus since the early weeks of the pandemic in 2020.

Andrew Clark, chair of BuDS, repeatedly stressed the seriousness of Covid and urged disabled people to ignore those who downplayed the risks posed by its latest mutations, when he spoke at an online conference on Friday.

He told the conference of DPOs, organised by disAbility Cornwall & Isles of Scilly, that the Office for National Statistics (ONS) had already found that long Covid had produced an extra 400,000 disabled people.

He criticised the government’s current policy of allowing the virus to circulate freely, and he said the scientific consensus was that this was allowing the virus to keep mutating and creating further waves.

He said: “It can’t be emphasised enough that this is going to keep on happening forever as long as the virus is allowed to circulate freely.

“Evolving, adapting, evading protection is what the virus does.”

Early in 2020, BuDS began to put together an expert group to provide advice about COVID-19 to disabled people in the county and wider afield, and it now includes professional statisticians from the NHS and the Office for National Statistics (ONS), and NHS clinicians, and has maintained close contact with the government’s Scientific Group for Emergencies (SAGE).

Clark said later that members had agreed to take part in the expert group because they “recognised the value of working with a non-party-political grassroots organisation which was trying to keep people safe”.

He told Disability News Service: “As the government increasingly-ignored scientific and medical evidence in its Covid policy-making, more and more insiders were willing to help organisations like BuDS which were committed to giving people the best possible factual information so that they could make informed decisions about their safety.

“We have the respect of our expert advisors and they have our respect, which is a relationship that works.”

So far, BuDS has published more than 250 articles about Covid on its website, as well as a weekly Covid risk assessment for disabled people in Buckinghamshire, and information videos.

There are more than a dozen staff and volunteers in its Covid team, with its Covid work funded through grants from the National Lottery-administered coronavirus fund and two local grant makers, including the Rothschild Foundation, one of its longer-term supporters.

Dedicated funding for the project has now dried up, which Clark said was “massively” holding back its ambitions, so the work is being supported from the charity’s general funds while it seeks further financial support for its ongoing Covid work.

Clark also told the conference that a small group of backbench MPs had been allowed to disproportionately influence the government’s COVID-19 policy in exchange for allowing the prime minister to stay in his position, and they had ensured public health policy was “very strongly skewed” towards abandoning control of the virus and allowing it to spread freely.

He said that BuDS’s own mid-range estimates suggested that there could be between 600,000 and 1.9 million more disabled people by 2025 than there would have been without Covid.

The most extreme-case scenario suggested as many as 4.1 million more disabled people by 2025.

Because many of these newly-disabled people will be younger than the current average age of disabled people, this is likely to lead to disability becoming “more mainstream”, he said.

Clark said this meant there would be a “very significant” increase in demand for the services of DPOs, of anything between five and 30 per cent.

He said: “If like us you’re a campaigning and awareness-raising DPO then you have a huge new area to work in.

“As being disabled becomes more mainstream, it brings more disabled people into the world of disability.

“A lot of the long-standing disability issues, like barriers to accessibility, attitude, hate crime, there’s the opportunity there to enliven that debate by applying it to a new group and applying it in new contexts.”

He added: “‘It gives a huge conceptual opportunity for DPOs to break out of a minority group mindset… and actually start looking at disabled people as a much more mainstream group in society, rather than a marginalised minority.”

But he also warned that the risks posed by the virus meant that DPOs needed to accept “some really hard realities”.

He warned that – short of a “miracle” in the development of the pandemic – DPOs that return to their pre-Covid working styles would be “effectively facing death by a thousand cuts”.

He said: “Over the next three years, a significant percentage, possibly all, of your staff and volunteers and service-users are going to catch COVID-19; many of them are going to catch it repeatedly.

“As a result of that, a significant percentage of your workforce and volunteers are going to drop out of your workforce.

“That means that finding people, recruiting people, is going to be a lot more difficult.

“Many of you, as we have at BuDS, have had to cope with the deaths of staff and volunteers and service-users and that is also going to be a recurring theme.”

He added: “COVID-19 is not going away, it’s not turning into a mild seasonal illness like influenza, it will remain for the foreseeable future a virus that is going to cause significant health [problems] and acute illness and long-term disability.”

But he said there was an “easy, affordable and practical alternative” to allowing Covid to “ruin your DPO”.

BuDS has adopted a “Covid Careful” strategy, taking scientifically-proven precautions that allow a “Covid-safe” office, with equipment to clean the air of the virus. Also, all staff and volunteers must wear FFP2 masks in risky situations.

He said: “It has not been difficult, it has not been expensive. We have changed the way we work to enable us to work just as effectively.

“As a DPO we intend to go on being a successful organisation which demonstrates in its own work how disabled people can live safely with Covid.”

He said BuDS was happy to share its work and Covid-related plans with other DPOs.

Friday’s conference also heard “harrowing” and “powerful” testimony from DPOs in Ukraine about the impact of the Russian invasion on disabled people in their country (see separate story).

30 June 2022



Covid inquiry ‘must examine catastrophic impact of pandemic on disabled people’

The COVID-19 public inquiry must dedicate “time and resources” to hearing directly from disabled people themselves so that it can examine the “catastrophic” impact the pandemic has had on them, according to a leading user-led organisation.

Inclusion London spoke out this week after the government released the final terms of reference for the inquiry, following a public consultation.

The inquiry formally began its work on Tuesday (28 June).

Disabled people have described over the last two years how their rights were repeatedly breached during the pandemic.

A number of disabled people’s organisations (DPOs) took part in the consultation, which helped lead to some changes to the inquiry’s draft terms of references.

But Inclusion London said it still had concerns about whether the inquiry would investigate the reasons for the disproportionately high deaths, increased discrimination, isolation, loss of support and deterioration of physical and mental health amongst disabled people.

The inquiry says it will “examine, consider and report on” preparations for the pandemic and the response to it across England, Wales, Scotland and Northern Ireland.

Among its aims, it will consider any differences in the impact of the pandemic on disabled people, as well as those from other groups protected under the Equality Act.

It will also look at how decisions were “made, communicated, recorded, and implemented”, which should allow the inquiry to examine the government’s repeated failure to provide vital COVID-related information in an accessible format to Deaf and disabled people, including the refusal to provide an on-stage British Sign Language interpreter at televised ministerial briefings.

The inquiry will examine the “shielding and the protection of the clinically vulnerable”, which should allow it to probe why the government released new guidance for those seen as clinically extremely vulnerable to the virus less than 24 hours before the England-wide lockdown that began in November 2020.

Another area included in the terms of reference is the “discharge of patients” from hospitals and the use of “do not attempt cardiopulmonary resuscitation” (DNACPR) decisions.

This will allow it to investigate the government’s decision – early in the pandemic – to discharge hospital patients into care homes without testing them for COVID-19, causing the loss of thousands of lives of disabled and older people.

And last year, the Care Quality Commission found hundreds of DNACPR decisions that had been put in place since the start of the pandemic and “had not been agreed in discussion with the person, their relative or carer”.

The inquiry will also examine “care in the home”, allowing it to investigate widespread failings that affected disabled people receiving direct payments to pay for their care and support at home.

These failings included many disabled people who receive direct payments to pay for their personal assistants being unable to access personal protective equipment in the early months of the pandemic, and how the government only published guidance to help people on direct payments more than five weeks after it had published guidance for the wider social care sector.

The inquiry will also look at how the government responded to the pandemic through the social security system and its support for “vulnerable people”, which should include the failure to offer recipients of so-called legacy benefits such as employment and support allowance the same £20-a-week benefit increase during the pandemic that was given to those on universal credit.

Svetlana Kotova, Inclusion London’s director of campaigns and justice, said: “The impact of the pandemic on disabled people has been, and continues to be, catastrophic.

“Six out of every 10 people who died were disabled.

“Disabled people have felt expendable as though their lives are less worthy, many lost support, struggled to access basic necessities, and others experienced increased levels of discrimination, exclusion and abuse.

“We jointly lobbied the inquiry together with other DPOs to expand the terms of reference to ensure that the impact of the Covid pandemic and the response to it on disabled people was fully investigated.”

She said Inclusion London welcomed the references to protected characteristics and the impact on those who receive social care support.

But she said that “considering the disproportionately negative impact Covid has had on disabled people, the inquiry must dedicate time and resources to hear directly from disabled people themselves.

“Not only that, but they must also investigate how the needs of disabled people were considered when policy decisions were made to fully establish the real reasons behind the disproportionately high deaths, increased discrimination, isolation, loss of support and deterioration of physical and mental health amongst disabled people.

“It cannot just be attempted to be explained away by stating that disabled people were already ill and/or vulnerable.

“Furthermore, we are disappointed that the inquiry will not consider the ongoing impact of Covid on disabled people.”

Disability Rights UK said it had taken part in the consultation and was “broadly pleased” with the changes that had been made to the terms of references.

Shaping Our Lives (SOL), which published research on the impact of the pandemic on disabled people in late 2020, said the terms of reference suggested some key issues could still be left out of the inquiry.

Becki Meakin, SOL’s involvement manager, pointed to the need to examine the funding that would enable DPOs “to build capacity and resilience for a future event, and probably to fund the ongoing demand [for their services] from the pandemic”.

She said she was concerned that disabled people were not explicitly identified as a priority group in the terms of reference.

She also questioned whether the inquiry would investigate how inclusive of marginalised groups the community responses to the pandemic were during the lockdowns.

And she said that disabled people needed to lead on any strategy to avoid similar disproportionate impact from future emergencies.

Meakin stressed that services were needed now “to support disabled people to regain confidence and independence, choice and control”.

She added: “We cannot wait several years for the findings of this inquiry.”

30 June 2022



Mayor’s ‘ultra low emission zone’ plans ‘will impact tens of thousands of disabled people’

Plans to widen the ultra-low emission zone (ULEZ) in the capital will discriminate against tens of thousands of disabled Londoners and cause significant harm to many of them, a senior representative of the mayor of London has been told.

Disabled people’s organisations (DPO) and disabled campaigners told a senior Transport for London (TfL) executive this week that the expansion of ULEZ would drive many disabled people into isolation.

Although the mayor of London, Sadiq Khan, is planning some exemptions and mitigation for disabled people, DPOs said this week that these measures were not strong enough, and they called on him to do more.

ULEZ was introduced in 2019 to cover central London, and expanded to inner London last year, but the mayor is now consulting on plans to extend it again, from August 2023, this time to cover most of Greater London.

The aim of the ULEZ scheme is to clean the city’s toxic air, which the mayor says “is leading to thousands of premature deaths every year”.

But disabled people say the plans to expand ULEZ will have a disproportionate negative financial impact on those disabled Londoners not exempt from the charges, during a cost-of-living crisis and at a time when one in three families with a disabled adult in London is living in poverty.

Inclusion London this week held an online meeting of London DPOs and disabled people so they could raise their concerns with Christina Calderato, director of transport strategy and policy for Transport for London (TfL).

Mariya Stoeva, access project coordinator for Action Disability Kensington and Chelsea (ADKC), told the meeting that many ADKC members had raised “serious concerns” about TfL’s assessment of the impact of the proposals on disability equality, and about the impact on disabled people who receive support from care workers and carers.

She said: “I would also like to ask what measures TfL has taken to mitigate the risks of disabled people’s isolation, about socialising.

“This could lead many disabled people to be isolated.”

Laura Vicinanza, Inclusion London’s policy and stakeholder engagement manager, said: “ULEZ is being introduced to reduce air pollution and while disabled Londoners are disproportionately impacted by air pollution, disabled people are also more likely to be living in poverty than non-disabled people.”

She said the scheme could end up increasing the health inequality disabled people face rather than reducing it.

Under the expanded ULEZ scheme, a daily £12.50 charge will be levied on older, more polluting light vehicles, and although there will be a four-year exemption for those with blue badges, it currently only applies to those with a vehicle tax exemption.

This means that those with a registered vehicle – mostly people with the enhanced rate mobility component of personal independence payment – will qualify for the four-year ULEZ exemption, but those without a vehicle that is registered tax exempt will not.

There are fears that the current, limited exemptions will leave many disabled people – and their care and health workers, personal assistants and carers – forced to pay the £12.50-a-day charge every time they use their car.

Estimates suggest that as many as 30,000 blue badge holders have non-ULEZ compliant vehicles and will not be exempt and so will be forced to pay £12.50 extra a day to use their vehicles from August 2023.

Tripti Lapham spoke of the challenges she would face as a disabled single mother, with a daughter who needs to attend multiple hospital appointments, and she said she would not be able to afford to replace her car for one that meets the ULEZ requirements.

It is currently possible to claim a reimbursement for the ULEZ charge for appointments through the NHS, if the disabled person does not have an exemption for their vehicle and they are at “moderate or high risk” from Covid, and for some patients who are “too ill, weak or disabled to travel to an appointment on public transport”.

But Lapham said was already overwhelmed with the forms she had to fill out to claim support for her daughter.

And Kush Kanodia, a disabled ambassador for Disability Rights UK (DR UK), who has campaigned for an expansion of the exemptions for disabled people, said the reimbursement scheme was “a red herring” because most disabled people do not know about it and “will not fill out a form every time they go to the NHS”.

He said: “Climate action must go hand in hand with climate justice, otherwise all that will happen is that it will increase poverty and inequality for people who are already most impacted.”

Kanodia read out the concerns of one ADKC member, who claimed that it would cost them £50,000 to buy a new car and adapt it, as they have already had to scrap their car because of ULEZ.

The email said: “It will not be feasible to do so and it will leave me without independence to go and do whatever I need to do.”

Vicinanza said: “In the past few months I have talked to many DPOs and unfortunately I have been hearing similar concerns.”

Kate Toon, Touchpoint services manager for Inclusion Barnet, said she was “really concerned” about the impact of the ULEZ expansion on the many disabled people who do not use public transport because they are clinically extremely vulnerable to Covid, but still have to attend many medical appointments in London.

Maria Nash, a former trustee of Inclusion Barnet and a powered wheelchair-user, said she was concerned about the impact of the ULEZ charges on her care workers, which was “a huge problem”.

Stephanie Vaz, an ADKC trustee, said: “I am really scared for when my exemption expires, because I can’t afford a new car.”

Because her car is in her dad’s name, she was not eligible for a car scrappage scheme the mayor ran previously, which provided £2,000 for people receiving certain benefits who were willing to scrap a vehicle that did not meet the ULEZ standards.

The mayor is planning to run another car scrappage scheme when ULEZ is expanded, but the details will not be announced until after the consultation process.

Calderato said she knew there were “families who are struggling and dealing with huge amounts in everyday life”.

And she said TfL would “absolutely” look at whether it could simplify some of its processes.

She said: “We do think [the ULEZ policies] are really important to improve public health but we want to be able to do that in a way that is as reflective and understanding of the challenges that people face as they can be.

“We really want to hear if there are things that we have missed and need to hear from people who have got lived experience and can make sure that we are better informed when we are writing [the consultation] up and making recommendations to the mayor.”

Calderato said the potential for isolation was “a serious issue and one we need to consider”.

But she said there was already 82 per cent compliance with the ULEZ standards in outer London, and by August 2023 this was expected to have risen to about 95 per cent of vehicles, so 19 in 20 people will not have to take action.

Kanodia wants the mayor to agree to the same reasonable adjustments for disabled people that are already in place for London’s congestion charge zone, granting temporary ULEZ exemptions for all those with blue badges – whether they have their own car or not – and their care workers.

He said: “I have been proposing this to [TfL] since the beginning of last year but I have been ignored and all that has happened is disabled people’s human rights have been violated [when we are in a] pandemic and a cost-of-living crisis.

“I don’t understand what the problem is. It feels like talking to a brick wall.”

Calderato said that extending the exemption to all blue badge holders would undermine the benefits of the scheme.

She said the exemption was more generous with the congestion charge because it was “very difficult” to avoid it, but the ULEZ charge was easier to avoid, for example by driving a compliant vehicle.

She said: “What we are trying to do with the scheme design is to identify what the difficulties are and make sure we put mitigations in place.”

But Kanodia pointed to the cost-of-living crisis, TfL proposals to cut central London buses by one fifth, and much of public transport in the capital being inaccessible to many disabled people, and he said: “You are not looking at the cumulative impact on disabled people.

“Do you want London just for the rich people, just for the non-disabled? Do you want disabled people not to have social mobility in London?”

Calderato said: “Definitely not and that’s why we are consulting on changes like this.

“It’s really important for me to be here and hear the experiences you’re talking about.

“We do really seek to try and mitigate the impact.

“I hear that that’s not working in the way that you’d like it to, and I really hear the experiences that people are talking about today and that will really help us, and help me take this away when we are developing, for example, the scrappage scheme… to consider whether we do need to make any modifications to the proposals.”

Toon said she wanted to say how discriminated against she felt having listened to TfL’s proposals, as someone who would not be eligible for the ULEZ exemption because she does not receive the enhanced mobility rate of personal independence payment.

She said: “You are completely and utterly pushing myself and many hundreds and thousands of people aside, who suffer on a day-to-day basis with difficulties with getting to medical appointments and being able to see our loved ones.

“It’s alienating us, it’s absolutely alienating us. It should be help, not barriers being put in place for us.”

She agreed with Kanodia that all those with a blue badge should be exempt from the ULEZ charges.

Calderato told her: “I really take the point and I hear loud and clear that people don’t think that the existing things go far enough, and we should be thinking again about blue badge exemptions.”

She said TfL was “absolutely not closed to the idea of making further improvements to the scheme”.

30 June 2022



Disabled activists will push for changes to draft mental health bill that ‘breaches rights’

Disabled activists have pledged to push for changes to the government’s new draft mental health bill because it is set to retain “fundamental human rights breaches”.

Health and social care secretary Sajid Javid this week published the draft bill, which he said was a “a significant moment in supporting people with serious mental health issues”.

The government says the legislation will “ensure greater choice and autonomy for patients in a mental health crisis”, address the disproportionate number of people of colour detained under the Mental Health Act, and improve the treatment of people with learning difficulties and autistic people, and of people with mental distress in the criminal justice system.

The draft bill, which applies to England and Wales and will reform the Mental Health Act 1983, will now be examined in detail by a parliamentary committee before the government publishes a final version.

It is too soon for disabled people’s organisations and grassroots groups to have carried out detailed analysis of the draft bill, but campaigners say it is already clear that it will not provide full human rights for people with a mental health diagnosis.

The draft bill is based on a white paper published in January 2021, and although many of last year’s proposals were welcomed, the white paper built on recommendations made by Sir Simon Wessely’s independent review of the Mental Health Act in 2018, which was criticised for falling “significantly short” of recommending full human rights for people in mental distress.

Dorothy Gould, founder of the user-led, rights-based organisation Liberation, said it was clear already that the draft bill “retains fundamental human rights breaches and that there are too many loopholes in proposed measures that have been seen as a step forward”.

She said that, despite proposed improvements to the Mental Health Act 1983, the draft bill would still significantly breach the UN Convention on the Rights of Persons with Disabilities (CRPD).

And she said it was “way out of date with other exciting international developments”, such as the recent call from the World Health Organization to implement the steps needed if there is to be an end to “coercive practices such as forced admission and forced treatment”, and for mental healthcare to be “grounded in a human rights-based approach” and “located in the community”.

Liberation was set up to promote the UN convention and has taken the lead among disabled people’s organisations that are supporting its work to campaign against “fundamental human rights flaws in Mental Health Act reform”.

It is also working with people with learning difficulties on their concerns about the reforms.

Mental health charities have so far welcomed the draft bill as a replacement for the “unbalanced and outdated” Mental Health Act, but stressed that it will need parliamentary scrutiny.

But there do not appear to have been any concerns raised this week by charities or MPs about the failure of the draft bill to meet the UK’s obligations under the CRPD.

30 June 2022



DWP yet to sign claimant deaths legal agreement with watchdog

The Department for Work and Pensions (DWP) has yet to agree to sign a legal agreement with the equality watchdog, after “serious concerns” were raised about its treatment of disabled people claiming benefits.

The Equality and Human Rights Commission (EHRC) announced in April that it was “requiring” DWP to improve the way it treated disabled benefit claimants, after campaigners raised concerns about the deaths of countless disabled people that have been linked to the department’s actions.

The commission only announced the plan after refusing to follow through on proposals for an inquiry into the deaths.

EHRC said in April that it hoped DWP would sign a legally-binding section 23 agreement by this summer and that it expected it “to be in place shortly”.

The agreement, EHRC said, would commit DWP “to an action plan to meet the needs of customers with mental health impairments and learning disabilities”.

But work and pensions secretary Therese Coffey told MPs on the work and pensions select committee yesterday (Wednesday) that an agreement had yet to be signed.

And she appeared to suggest that an agreement might not be reached.

She said: “The section 23 agreement has not yet been agreed with EHRC… and the approach… we are in discussion with EHRC about this, because I think we are awaiting further elements from the EHRC to some extent on why they have made the claims that they have.”

In response to questions from Labour’s Debbie Abrahams, Coffey said discussions were ongoing between DWP and EHRC, and she added: “We hope to make progress sometime in the summer.”

Coffey stressed that DWP had to agree to any section 23 agreement.

She said: “It’s seen as a particular way to try and have a constructive approach. The EHRC has all sorts of levers it can do but that’s why we are still talking to them.”

Coffey was also asked about DWP’s continuing refusal to release redacted versions of secret internal process reviews (IPRs), which are carried out by the department into deaths and other serious incidents involving benefit claimants.

DWP is currently engaged in a battle with Disability News Service (DNS) about releasing two batches of IPRs.

It has even branded DNS “vexatious” for attempting to use the Freedom of Information Act to obtain recommendations made by more than 90 IPRs carried out between 1 September 2020 and 28 April 2022.

DWP has claimed that to carry out the necessary reviews and redactions of each IPR would place an “undue burden and pressure” on the department, despite its £7 billion budget.

The Information Commissioner’s Office (ICO) is currently investigating a complaint lodged by DNS against the refusal of DWP to release an earlier batch of redacted IPRs, which were completed between April 2019 and September 2020.

Coffey said yesterday: “There’s an ongoing back and forth with the ICO and I’m not sure what I can say right now.”

The committee also questioned Coffey about unpublished figures obtained by DNS earlier this year which showed that the backlog of disabled people waiting for a personal independence payment (PIP) assessment had more than trebled in the last five years.

The unpublished figures showed the size of the queue was 88,500 in October 2016 and had risen to nearly 312,000 by December 2021, and that the backlog had begun rising steeply far before the pandemic began in early 2020.

In response to questions from Labour’s Steve McCabe, Coffey said DWP had had an action plan to deal with the backlog and had been “starting to get on top of it”.

But she added: “We were starting to get to the point where we were processing more than the claims coming in. That’s now gone again, so it is a challenge, I’m not denying it.”

When DNS had asked the department about the figures in March, a spokesperson had declined to say why the minister for disabled people, Chloe Smith, thought the backlog had risen so steeply, whether she was concerned by the increase, and what steps she was taking to reduce it.

Peter Schofield, DWP’s permanent secretary, told the committee yesterday that the backlog was a “good challenge”, but he insisted that the time it takes for a new PIP claim had remained steady at about 20 weeks.

He said there was uncertainty about whether the number of new PIP claims – which was a key factor in the backlog – would continue to increase or would now fall again.

McCabe said: “Citizens Advice told this committee that there are people with disabilities who are getting into debt at the moment, people unable to heat their homes at the moment because they are waiting for these assessments, and that’s the concern.”

Schofield told him: “The new claims journey, the amount of time it takes for a new claim, is broadly steady, indeed it has come down in recent weeks because of the action we have taken. It’s currently about 20 weeks.”

He said health assessors working for DWP contractors Capita and Atos had “agreed a recovery plan” for the backlog, which they were “overshooting”, while the longer-term plan was to reduce the backlog by implementing DWP’s Health Transformation Programme.

30 June 2022



‘Huge barrier’ of care charges is forcing disabled people into poverty, peers are told

A House of Lords committee has been told how the “huge barrier” created by social care charges is forcing disabled people into poverty.

Andy McCabe, who himself uses council-funded support, told the adult social care committee that the charges being demanded by local authorities were “excessive” and “not sustainable for a lot of disabled people”.

McCabe, a social worker, was giving evidence to the committee as part of its inquiry into adult social care.

He said the amount of money being demanded of disabled people as a contribution to their support packages was “causing a lot of mental anguish” and was “morally wrong”.

He said that people in his situation were being asked to pay between £80 and £120 a week from their means-tested benefits, which “can’t be right”, and he suggested that all care charges should be scrapped, as has happened with Hammersmith and Fulham council in London.

The committee also heard from consultant Tricia Nicoll, another user of social care, both for herself and her two children, who said people should stop viewing the need for social care as “a disaster” and see it instead as the “enabler” it is.

She said: “Whatever you call it, it is an enabler for me to live a good life, an enabler for my kids to live a really great life.”

Nicoll said this was why she did not like the term “carer” because it meant that the disabled person was seen as being “cared for”, which she said was “a horrible concept”.

She said: “I don’t know if anybody here would want to be seen as someone who was cared for.

“Cared about, yeah, absolutely, but ‘cared for’ puts you in a very passive role.

“While we still use that language, I think it’s difficult to change how we think about social care.”

Nicoll also spoke about the importance of ensuring that support for users of social care was provided by disabled people’s user-led organisations (DPULOs).

She worked 14 years ago with Baroness [Jane] Campbell, a member of the committee, on a proposed independent living bill which aimed to ensure there was a DPULO in every local authority area in England.

But Nicoll said the funding for DPULOs was “no longer there” and the sector was being “decimated”, with DPULOs also being forced to “jump through hoops” by the local authorities that commission them.

McCabe also told the committee of the need for action to address the accessible housing “crisis”.

He called for strict laws to ensure a minimum proportion of homes are built to accessible housing standards.

He also called for action to address the excessive delays in the disabled facilities grant system, which has an average waiting time of five or six months for an adaptation to be installed once it has been approved by a local council.

He said: “That’s actually a really long time to live without a toilet.”

McCabe said the shortage of accessible housing to rent meant that disabled people were living in “potentially unsafe situations for an extended period of time”.

He told the committee that the accessible housing crisis needed to be viewed with “urgency” and as the “emergency” it is for many disabled people.

Meanwhile, a Local Government Association (LGA) survey of senior councillors responsible for adult social care has raised fresh concerns about the government’s much-criticised care funding reforms.

Almost all councils (98 per cent) responding to the survey said they did not believe the government had allocated enough funding for the reforms.

The reforms will introduce a new £86,000 cap on care charges in England but will not count financial contributions made by local authorities to people’s care and support.

Of the £36 billion the new health and social care levy will raise over the next three years, only £5.4 billion is ringfenced for social care reforms in England, LGA said.

The survey found that three-quarters of responding councils were not confident they would have the required capacity in frontline staff to deliver the reforms.

LGA warned that unless there was a government rethink, service-users “may experience reductions in quality and availability of care and support services, while at the same time paying more for them through the new health and social care levy and increased council tax”.

30 June 2022



Other disability-related stories covered by mainstream media this week

Sky News analysis reveals that the social care sector was straining from a shortage of funding and a rising need long before the pandemic revealed a system in crisis. More than half of local authorities experienced a fall in per person spending in the decade to 2020, according to data from NHS Digital. The numbers are even starker in London, where almost nine in ten local authorities experienced a funding cut: Read the Sky News story 

A blind man from Croydon is terrified he might lose his benefits if the Department for Work and Pensions keeps sending him letters that are not in braille. Self-employed access consultant Dr Yusuf Ali Osman is taking DWP to court because of its failure to communicate with him in a way he can access. Dr Osman receives employment and support allowance and personal independence payment so receives annual letters about the benefits, and more regular letters about permitted work rules. He has asked DWP to use braille or email, but it continues to send hard copy letters or scanned PDFs, which are not accessible: Read the My London story

A disabled woman has been left housebound as spiralling energy costs mean she can no longer afford to charge her electric wheelchair. Jade Cotton said she was already dipping into the red and was borrowing money from relatives to pay the bills. The 34-year-old, from Birmingham, has been struggling to cope after her electric bills shot up to unaffordable levels, and has now been forced to stop charging her electric wheelchair overnight: Read The Mirror story

30 June 2022


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