| Health and Disability Green Paper Published: Shaping Future Support
The DWP has published its long-promised Health and Disability Green Paper titled Shaping Future Support. The DWP says that: “This green paper considers the options for addressing some of the short to medium-term issues in health and disability benefits. It will also start a discussion about the opportunities for wider change to deliver on the objectives of the health and disability benefit system. We are consulting on the following aspects of our support for people with disabilities and health conditions:
- Ways to provide more support to help meet the needs of Disabled people and people with health conditions and allow them to more easily access and use benefits and services.
- Improve employment support for Disabled people and people with health conditions, and how to encourage people to take up that support, where possible
- Short-term improvements to our current services such as improvements to assessments and decision making, to improve the experience of Disabled people.
- Changes to future assessments and alternative approaches.
- Changes that could be made to the structure of the main benefits claimed by working-age Disabled people and people with health conditions.”
Minister for Disabled People Justin Tomlinson said that the Green Paper:
“… represents an important step for improving the benefits system, increasing opportunities for employment and helping more people to lead independent lives.
It is part of a wider package of support for Disabled people that includes the National Disability Strategy which, for the first time, represents focus and collaboration across Government to set out a wide-ranging portfolio of practical changes we can take to help people in every aspect of daily life. Our Health Is Everyone’s Business consultation response also looks at how employers can support people at work.”
The Our Health is Everyone’s Business consultation response and the National Disability Strategy and the are expected to be published within the next few days.
The consultation started by the launch of the Green Paper will last for 12 weeks.
Following the consultation, detailed proposals will then be brought forward in a White Paper in 2022, setting out how the DWP “can better enable people to take up work and live more independently”, and outline the changes it wants “to make to the benefits system to better address structural and delivery challenges”.
Autism Strategy Published
The Government has published a five year strategy aimed at improving the diagnosis of autism and public understanding of the condition.
The strategy will be backed by £75m in its first year – including £40m set out in the NHS Long Term Plan to improve capacity in crisis services and support children with complex needs in inpatient care.
Autistic people, the Department of Health and Social Care DHSC said, face multiple disadvantages throughout their lives, with too many struggling to get support that is tailored to their needs at an early enough stage and facing stigma and misunderstanding, often leaving them lonely or isolated.
There are approximately 700,000 autistic people in the UK and the strategy acknowledges that many experience health inequalities during their lives. The life expectancy of people with autism is approximately 16 years less on average compared to the general population and almost 80% of adults with autism experience mental health problems during their lifetime.
Health and Social Care Secretary, Sajid Javid said: “Improving the lives of autistic people is a priority and this new strategy… will help us create a society that truly understands and includes autistic people in all aspects of life. It will reduce diagnosis waiting times for children and adults and improve community support for autistic people. This is crucial in reducing the health inequalities they face, and the unacceptable life expectancy gap that exists today.”
Minister for Care, Helen Whately said: “Far too many autistic people still struggle to get the support they need in childhood, and as adults – and this is often exacerbated by not getting a timely diagnosis. This landmark strategy will help give autistic people equal opportunities to flourish in their communities as well as better access to the support they need throughout their lives.”
The COVID-19 pandemic has exacerbated challenges many autistic people already face, such as loneliness and social isolation, and anxiety.
The strategy aims to:
- Improve understanding and acceptance of autism within society:
- Strengthen access to education and support positive transitions into adulthood
- Support more autistic people into employment
- Tackle health and care inequalities
- Build the right support in the community and supporting people in inpatient care
- Improve support within the criminal and youth justice systems
Early identification can play an important role in enabling children and young people to get timely support, which is crucial in preventing escalation of needs.
Caroline Stevens, Chief Executive of the National Autistic Society said: “We and our supporters have long campaigned for a fully-funded public understanding campaign, significant investment in reducing diagnosis waiting times and better post-diagnostic support. No-one should feel judged for being autistic or have to wait many months for a potentially life changing diagnosis and vital help and support. We’re really pleased to see concrete actions to tackle this in the first year of the new strategy.”
Jolanta Lasota, Chief Executive of Ambitious about Autism, said: “This long-awaited strategy is desperately needed by autistic children and young people and their families, who have had their lives turned upside down by the pandemic. Even before COVID-19, autistic children and young people were too often denied basic and fundamental rights, such as the right to a decent education, to high quality healthcare and the opportunity to live and work in a community of their choice. For many families, the pandemic has only exacerbated this, creating further loneliness, social isolation and poor health outcomes.”
COVID-19 vaccine to be offered to some teenagers
Children in England aged 12-17 at increased clinical risk from COVID-19 are to be offered the Pfizer vaccine. The decision followed a recommendation from the independent Joint Committee on Vaccination and Immunisation (JCVI).
Ministers said the vaccine will be offered to children aged 12 to 15 with severe neurodisabilities, Down’s syndrome, immunosuppression and multiple or severe learning disabilities. Young people aged 16 to 17 with underlying health conditions which put them at higher risk of serious COVID-19 should have already been offered vaccination.
The vaccine will also be offered to children and young people aged 12 to 17 who live with an immunosuppressed person. The Government says this will protect their household contacts, who are at higher risk of serious disease from COVID-19 and may not generate a full immune response to vaccination.
The JCVI is not currently advising routine vaccination of children outside of these groups based on the risk-benefit analysis.
The Pfizer vaccine is the only one to be authorised for 12-17 year olds in the UK. This followed a US clinical trial in around 1,000 children aged 12 to 15 that found side effects in this group were generally short lived and mild to moderate.
Real-world data on the safety of COVID-19 vaccines in children is currently limited, but there have been extremely rare reports of myocarditis (inflammation of the heart muscle) and pericarditis (inflammation of the membrane around the heart) following the use of the Pfizer and Moderna vaccines in millions of younger adults.
Fazilet Hadi, Dr UK’s Head of Policy, said: “This decision is positive and will provide some reassurance to clinically at risk young people and to immunosuppressed people with young people in the family home.”
Social care directors paint bleak picture in latest survey report
The Association of Directors of Adult Social Services (ADASS) has warned of ‘an avalanche of need’, with 75,000 people waiting for assessments or care and support.
Almost 7,000 people have been waiting more than six months for a social care assessment, the association warned after publishing its spring survey.
Though there are no statutory timescales for assessments under the Care Act 2014, the Local Government and Social Care Ombudsman has previously said that such waits should not exceed 4-6 weeks.
The survey found just under 55,000 people were on waiting lists for assessments with almost 20,000 others waiting for care and support or direct payments to be started. Almost 160,000 people had been waiting over a year for a care and support review, contrary to the expectation set out in the Care Act statutory guidance of a 12-month interval between planned reviews.
ADASS warned that waits of this nature were putting older and Disabled people at significant risk. The survey report said “While social work teams do their best to prioritise based on the information they glean, it is inevitable that many people will deteriorate, become mentally or physically unwell, lose confidence, fall, or that unreported or concealed abuse or neglect will worsen.”
ADASS leaders blamed Covid-19 and the failure of resources to keep pace with demand. The research found councils were planning to make savings of £601m to manage their finances this year, equivalent to 3.7% of their net budgets.
Half were less than confident about meeting their duties to provide preventive services, under section 2 of the Care Act, up from 35% in 2019-20. ADASS said the survey showed a picture of “growing unmet and under-met need which impacts on life and wellbeing”.
DR UK Head of Policy Fazilet Hadi said: “The findings of this research are truly shocking. Tens of thousands of Disabled people are being left without the vital care and support needed to lead safe, dignified and independent lives.
The Government’s reform of social care must radically improve the lives of both working age and older Disabled people. Sign up to our Social Care statement here.
We urge Disabled people and their loved ones to contact councillors and MPs whenever social care services are unjustly delayed or denied.
Equality body announces inquiry into decisions about social care
The Equality and Human Rights Commission (EHRC) is to investigate the experiences of people seeking to challenge council decisions on social care.
The EHRC said that a range of organisations working on issues facing Disabled and older people have raised concerns around barriers to complaining about or challenging decisions related to their social care. Announcing the inquiry, the commission said that people should be able to challenge a decision if they feel that it leaves them without the right support.
The inquiry covers England and Wales and includes social care and support for older and Disabled people and unpaid carers. It will explore:
- if people are made aware of their rights to social care and support, and how they can challenge a decision they feel is wrong
- whether local councils and other relevant bodies learn from challenges to improve decision-making in future
- access to advocacy
- whether effective systems are in place to check the quality and consistency of decision-making about people’s access to social care or support.
EHRC Chair Baroness Kishwer Falkner, said: “Decisions about social care and support carry crucial equality and human rights implications for people’s lives. They can affect the choice, control and dignity of older people, Disabled people and unpaid carers, and their ability to maintain relationships, live independently and participate in their communities.
“We know that the social care system has been under significant pressure and many problems have been exacerbated by the pandemic. With vital decisions about people’s care being made under such pressure, it is essential that there are effective ways to challenge them if people feel they have been left without the support they need.
The inquiry team will gather evidence from adults affected by the issues in its terms of reference, organisations that provide advice, support and/or advocacy services to people trying to navigate the social care system, as well as councils and national governments.
The inquiry team has published a short survey seeking views from social care users and their loved ones, as well as unpaid carers.
DR UK Head of Policy Fazilet Hadi said: “This investigation is very welcome. The Care Act sets out eligibility criteria and processes for assessment and planning, but the extent to which it is being implemented is in serious question.
The investigation on complaints and challenges will shine a light on the rigor and transparency of social care decision making processes.
We urge Disabled people to make sure our voices are heard by completing the survey and sharing experiences with the inquiry team.”
You can email the inquiry team at SCI@equalityhumanrights.com or call them on 0161 8298180 and leave a message. The full inquiry report will be published next year.
NHS England moves on access to mental health services as referrals soar
The NHS will set five new waiting time guarantees for access to mental health services, under plans announced this week.
The NHS is consulting on the new standards, which have been piloted by mental health providers in collaboration with acute NHS trusts, and are backed by clinical and patient representatives.
Assuming they are implemented following the consultation, patients requiring urgent care will be seen by community mental health crisis teams within 24 hours of referral, with the most urgent getting help within four hours. Pilot mental health liaison services for people arriving in A&E departments will be rolled out across the country.
NHS Chief Executive Simon Stevens said: “Together with the guarantee that mental health investment will increase each year as a share of the growing NHS budget – as has been the case each year since 2015 – these new waiting times standards are another key milestone in the journey to putting mental health on an equal footing with physical health, so-called ‘parity of esteem’.”
Mark Winstanley, the Chief Executive of Rethink Mental Illness, said: “While (the standards) will depend on the right staff being in post, they will also set the bar for something similar in social care, where so much of someone’s support for their mental illness actually takes place.”
Paul Farmer, Chief Executive of Mind, said: “Many thousands of people will be left with long term impacts from this period (the pandemic), whether because of bereavement, unemployment, trauma or the weathering effect of life during lockdown. Knowing that the NHS is committed to timely access to support could make all the difference as we emerge from the pandemic and plan for the future.”
The announcement came just days after NHS Digital published data that referrals of children and adolescents to mental health services more than doubled during the pandemic.
Dr Elaine Lockhart, who chairs the Royal College of Psychiatrists’ Faculty of Child and Adolescent Psychiatry, called the referral figures “heart-breaking” and “awful”. She told The Guardian that waiting lists are so long that significant numbers of young people will not get treatment in time to prevent them growing into adults with “entrenched mental health issues that could have been avoided had we been able to intervene earlier”.
Assisted Dying debate reignites
Over the past two weeks, disabled people have spoken out, for and against Assisted Dying. The All-Party Parliamentary Group (APPG) on Choice at the End of Life had a range of speakers supporting Assisted Dying. Whilst the APPG for Dying Well was devoted to hearing the views of Disabled people opposed to any change in the law.
Dr Stephen Duckworth OBE, a long-time disability rights advocate and disability equality trainer spoke at the APPG on Choice at the End of Life. He said that he well understood the discrimination that affected the everyday lives of Disabled people and that he had great respect for disability campaigners, who had fought for rights to autonomy, choice and control. Stephen said that he had had a great life but when the end came, he wanted to exercise his choice and control to determine how he died. He pointed to a recent survey that said that 86% of Disabled people felt the same way.
Baroness Jane Campbell, a long-time opponent of Assisted Dying introduced three speakers at the APPG for Dying Well; Dr Miro Griffiths, Dr Peter Scott-Morgan and Phil Friend OBE. They raised a number of concerns including the discriminatory nature of society, the lack of support for Disabled people to live well, advances in modern medicine which could enable life, difficulties in determining “end of life”, possible coercion by relatives, financial cost of maintaining life becoming a factor, doctors being asked to go against the ethos of saving life and the danger of initially restricted criteria being widened.
This debate has been reignited by a private members Bill introduced by Baroness Meacher in the House of Lords, which seeks the right to Assisted Dying for those with a terminal illness within the final six months of life. A Bill in the Scottish Parliament is also being lodged by Liam McArthur MSP.
Kamran Mallick, CEO of Disability Rights UK said “Assisted Dying is an issue where Disabled people on both sides of the debate, have deeply held convictions.
Disability Rights UK wants Disabled people to have the opportunity to review the issues and we are considering how best to do this.
Disability Rights UK currently has a neutral position and our Trustee Board will review this in September”.
Bereaved relatives call on DWP Secretary of State to launch public inquiry into benefits deaths
Families who have lost loved ones in cases where the Department for Work and Pensions has been implicated in their death, have written to the Secretary of State for Work and Pensions, Thérèse Coffey to demand a public inquiry into deaths and serious harm related to the benefits system.
The open letter is from the relatives of Errol Graham, Jodey Whiting, Philippa Day, Kevin Dooley, and Clive Johnson. The bereaved relatives say:
“Your department says that cases like ours are not part of a wider problem. But your own figures show that the DWP has internally investigated 97 deaths since summer 2019 as well as 27 cases of serious harm. How can these figures be acceptable? What will it take to overhaul the way that the system works, when so much harm has been done over so many years? It is hard to imagine a more serious concern for a department that exists to support people, yet the full scale of the problem is still not known because official records are inadequate and the system for investigating such serious cases is shrouded in secrecy.
For as long as that remains the case, other families will continue to suffer as we have. We have two urgent requests for the Government. Firstly, we want a full public inquiry to learn the truth about what has happened so far. Secondly, we are calling for a new independent body to be established to investigate future cases of death or serious harm in the benefits system.”
The letter has been sent as Rethink Mental Illness publishes a significant new report -Tip of the Iceberg? Deaths and Serious Harm in the Benefits System – showing that many parts of the benefits system have been linked to cases of death or serious harm, as part of its Stop Benefit Deaths campaign.
The Rethink report makes four key findings:
Recent data covering the last two years shows that the DWP conducted 124 Internal Process Reviews into death or serious harm. This represents an almost three-fold increase (176% rise) of IPRs compared to the period of February 2012 to July 2019.
There is a wide range of issues across the benefits system that have resulted in deaths, as well as causing self-harm and mental health crises.
Benefit deaths and serious harm reported in the media or investigated internally by the DWP may be the tip of the iceberg, with gaps in the way that cases are identified. There is also evidence linking DWP processes to widespread mental health harm including death by suicide.
The DWP’s current process for investigating cases of death or serious harm are not independent. They lack external oversight and it is unclear whether they have recommended, far less delivered, systemic policy or culture change within the DWP.
To help uncover the true scale of the problem, Rethink Mental Illness has also launched a call for evidence from members of the public who have been affected.
Anyone who has been affected by a death or serious harm related to the benefit system – either directly or to a loved one – can share their story in confidence here.
Tip of the Iceberg? Deaths and Serious Harm in the Benefits System is available from rethink.org.
The open letter to the Secretary of State for Work and Pensions is also available from rethink.org.
DWP refuse to publish analysis of £20 week Universal Credit uplift ‘as it is not public interest’
The Poverty Alliance has written to Therese Coffey MP, Secretary of State for Work and Pensions, after the DWP refused to disclose any analysis that it has undertaken on the potential impact on poverty of cutting the weekly Universal Credit £20 uplift from October 2021.
The Poverty Alliance is a network of Scottish organisations and individuals working together to end poverty. The refusal came after a Freedom of Information request by the Alliance, with the DWP reply that the disclosure of the information to ‘not be in the public interest’.
In its letter to the Secretary of State, the Poverty Alliance says:
“On 27 May, we submitted a Freedom of Information request to your department, requesting any analysis that you have undertaken on the potential impact on poverty of withdrawing the £20 uplift. The response from your department cited section 35(1) of the Freedom of Information Act. This meant that we were denied the disclosure of information and told that it was not in the public interest for it to be released.
However, we believe that it is clearly in the public interest to know whether this decision will deepen poverty for thousands of people across our country. We urge you to sanction the release of this analysis so that the public understand the likely impact of this decision.”
Peter Kelly, Director of the Poverty Alliance, said:
“Governments have a moral responsibility to take decisions that protect people from poverty. The UK Government increased Universal Credit by £20 because they knew it would otherwise fail to meet people’s needs. That was the right thing to do. Yet Ministers are now planning to cut that £20 at a time when so many are struggling to stay afloat, and are compounding that decision by refusing to be straight with the public about what the impact of that decision will be.
Ken Buter DR UK’s Welfare Rights and Policy Adviser said:
“The DWP’s refusal to publish this information is deeply worrying and sets a dangerous precedent. There can be no justification for withholding information on how the removal of the £20 week UC uplift will have on its 6 million claimants. It implies that the grounds for introducing the uplift still exist and the DWP knows this.
It also implies making this public will mean an even bigger backlash to its removal and more support for the calls for a £20 uplift to legacy benefits.”
The Poverty Alliance Letter to Therese Coffey is available from povertyalliance.org.
Severely Disabled man challenges removal of PIP after 28 days in hospital
Cameron Mitchell, a severely Disabled man is challenging a rule which halted his PIP payment after he had been in hospital for more than four weeks. Cameron, aged 19, cannot walk or speak. He suffers frequent seizures and muscle spasms and is fed through a tube. He has spent several periods of his life in hospital and recently had hospital care from December 2020 to June 2021.
After Cameron’s condition stabilised but before it was possible to discharge him from hospital, Cameron’s family took him on daily trips outdoors, and as his sole carers, provided essential care such as suctioning his chest, looking after his stoma bag, monitoring his condition and the machines that support him.
However, Cameron’s weekly PIP payments of £152.15 and as a result his mother’s weekly Carer’s allowance of £67.70 were halted suddenly in May 2021 when the DWP became aware that Cameron had been in hospital care for more than 28 days.
After 28 days, PIP rules provide that since the NHS is meeting the costs of care, the DWP no longer needs to pay. Cameron and his mother will have to pay back benefits “overpaid” from 25 January, when the rule states the PIP and Carer’s Allowance payments should have been stopped.
The support that will be lost due to application of the rule already amounts to almost £3,500 in PIP and over £1,500 in Carer’s Allowance. As Cameron is now in a hospice and it is still assumed that his care needs there are being met by others, the payments will not be resuming until he is able to return home.
Represented by law firm Leigh Day, the family are challenging the rule (Regulations 29 and 30 of the Social Security (Personal Independence Payment) Regulations 2013) that enforces the halting of PIP payments after someone in Cameron’s situation has been in hospital care for more than 28 days.
For further information see Severely Disabled man challenges halt to Personal Independence Benefit payments after 28 days in hospital available from leighday.co.uk.
DR UK sends ‘chase up’ to Secretary of State following her non response to our benefit related concerns
DR UK has written again to the Secretary of State for Work and Pensions following her non-response or acknowledgement of two letters we sent to her relating to the issue of benefit related deaths.
See the DR UK website for the text of our 21 July letter from our CEO Kamran Malik:
To help uncover the true scale of the problem of benefit related deaths and cases of serious harm, Rethink Mental Illness has also launched a call for evidence from members of the public who have been affected.
Anyone who has been affected by a death or serious harm related to the benefit system – either directly or to a loved one – can share their story in confidence here.
DR UK urges proper consultation with Disabled people on al fresco dining
The relaxation of licensing rules around al fresco dining and drinking outside pubs and restaurants is set to continue for at least another year, the Government has announced.
Introduced as an emergency measure last year to help the hospitality industry respond to the financial costs of the pandemic, the extension of the new pavement dining and drinking arrangements are included in the Government’s recovery strategy for the industry.
DR UK Head of Policy Fazilet Hadi said “Councils have a legal responsibility to consult with residents including disabled citizens to ensure that the impact of pavement dining on Disabled people is fully considered. Disabled citizens have an equal right to enjoy access to local streets and facilities.
Outdoor eating shouldn’t be at the cost of wheelchair users and people with sight and mobility impairments being unable to navigate furniture or being forced into the road.”
“Too often the consultation period on applications for such licences is too short and is not advertised widely enough for Disabled people to give their perspective.”
Disabled councillors banned from speaking about blue badge ban
A senior officer at City of York Council attempted to exclude two councillors from a debate about disabled people accessing the town centre – because they are disabled.
According to local paper reports from The Press online, the council’s monitoring officer advised Councillor Katie Lomas not to take part in the discussion about blue badge access to the pedestrianised parts of the city centre because she is a blue badge holder. This represented a prejudicial interest, the officer said. She also advised Councillor Ashley Mason to excuse himself from the debate.
The paper quoted Councillor Lomas saying: “To prevent me from participating in the debate is to treat me differently directly because of a disability and this is discrimination. Would a woman be advised that she cannot take part in a debate on women’s rights? Would a person of colour be advised they could not take part in a debate on racism?”
The Lord Mayor of York, Councillor Chris Cullwick, reversed the decision during the meeting after immediate outrage on social media.
He said he would grant a dispensation to both councillors “on the basis that it is in the interests of the inhabitants of the council’s area to allow the members to take part in that item”.
The York Disability Rights Forum said they had been “inundated” with messages from people who will be unable to reach vital offices, services and entertainment venues if the plans are approved.
They have won backing from the York Human Rights City Network, which called on the council to halt plans to permanently ban blue badge holders from the city centre – and urged them to rebuild trust with the disabled community.
Fazilet Hadi, DR UK’s Head of Policy, said: “Proposing to ban Disabled councillors from speaking in a debate is an extraordinary act of discrimination. It is horrifying that York Council seeks to exclude some of its own Disabled citizens from using the city centre. We recognise that towns and cities want to reduce the use of cars but this must not be at the expense of the equality and human rights of Disabled residents.”