Disability Rights UK Newsletter

Autistic boy wins right to life transplant hearing

The mother of an autistic boy has won a legal battle to ensure her teenage son has the right to a potentially life-saving transplant after Royal Manchester Children’s Hospital refused the option on the grounds that his autism would make the operation and aftercare too risky.

Without the transplant, William McLennan, who is 17, was looking at having just 12 months to live.

Presiding over the four day hearing, Mrs Justice Emma Arbuthnot said she had put herself in “William’s shoes”.

“I have no doubt he wants to live a life with the support of his family and that he wants to continue playing ‘kerbie’ long into the future,” she said.

She said that even though there were risks involved in a transplant it was the only way of potentially securing his life.

The court heard how William, who has autism, ADHD and learning disabilities, was not deemed to have the capacity to make such a complex decision about his future. The hospital argued that William would need to be under sedation and on ventilation for an extended period of time, which could cause him psychological trauma.

William told Justice Arbuthnot that while he was scared about the operation, he wanted the chance to live longer.

Ms Toli Onon, Joint Medical Director for Manchester University NHS Foundation Trust, said: “We welcome the clarity which this decision brings for William, his family and our clinicians. The Trust asked the Court of Protection to make today’s judgment because of how unusual, complex and risky the situation is.”

DR UK’s Head of Policy Fazilet Hadi said: “This case is a horrifying and prime example of the medical model of disability, where people are willing to make decisions on behalf of Disabled people without our choices and needs being honoured. It is appalling that the Hospital was willing to argue to let William die rather than have a shot at a longer, fulfilling life. Time and again, medical institutions gaslight Disabled people under the delusion that they are acting in our best interests. Nothing without us about us is for us. This is an important victory, not just for William, but for our whole community. It should never have needed to go to court.”

Read more on the BBC website.

Lords votes to remove social care cap conditions

The House of Lords has voted to remove conditions placed on the £86,000 care cost cap proposed by the Government as part of its social care reform. The cap, announced by the Prime Minister Boris Johnson last September was designed to limit how much any person spent on their social care during their lifetime. However, a few months later the Government said any care funded through the means tested system would not count towards the cap. This would mean that those with the lowest incomes would lose out the most.

However, in a debate in the House of Lords this week, peers said that the cap in its current state was “divisive” and “regressive” and that it was running against Sir Andrew Dilnot’s report which emphasised “Fairer Care Funding”, a report he commissioned that recommended a zero cap on care for anyone under 40 years old.

DR UK has worked with Inclusion London and Baroness Jane Campbell to brief the House of Lords on several unfair clauses within this Bill. A joint letter sent to Peers in the House of Lords last week explained the unfairness of the proposed cap on Disabled people, and how it would push Disabled people further into poverty.

198 members of the House voted in favour of dropping the Government’s proposed cap – set to come into effect for people in care from October 2023. 158 voted against its removal. The Government is yet to respond to the vote.

DR UK’s Dan White said: “Although this is a victory, there is still a long way to go to make sure that the clauses that are unfair to Disabled people are removed permanently. The campaign will continue when the Bill returns to the House of Commons.”

The letter is still available to edit and send to your local MP here

Disability Policy Centre releases report on Disabled representation in politics

A new Disability focused think-tank in Westminster launched a report last Tuesday. The report – Breaking Down Barriers: Improving Disabled Political Representation and Participation across the United Kingdom, can be found here.

The launch was attended by DR UK and was endorsed by Chloe Smith MP, Minister for Disabled People.

The report highlights research on where Disabled representation is currently lacking in politics – including just 1.2% of Disabled MPs – and puts forward two sets of recommendations for government and political parties. The recommendations range from reviews on accessibility, to commitment to the Disability Confident employer scheme, and the re-instating of a formal funding scheme for Disabled candidates.

Bethany Bale, DR UK Policy and Campaigns Officer, said: “We welcome this report and look forward to working with the Disability Policy Centre – it’s so important to have a Disabled-led and disability focused thinktank in Westminster.”

Taxi Bill will improve access to travel for Disabled people

The Taxis and Private Hire Vehicles (Disabled Persons) Bill is making its way through the House of Commons and will be moving onto the report stage at the end of next week. This new legislation will amend the Equality Act to make it easier for Disabled people to travel by taxi.

Jeremy Wright MP, the sponsor of the Bill, said: “The Bill builds on the progress made in the Equality Act to make it easier for people with a range of disabilities to travel by taxi or private hire vehicles and will, I believe, make a real difference for many. It has been a privilege to be able to present it and argue for it, and I am grateful for all the support it has received so far.”

Full details of the Bill can be found here.

DR UK calls on Home Office to make Disability Hate Crime a specific offence

Disability Rights UK has sent a letter to the Home Office calling for it to make Disability Hate Crime a criminal offence, rather than just an increase in sentencing. This would bring hate crimes experienced by Disabled people into the same standing as racially and religiously motivated hate crimes – and was recommended by the Law Commission last year.

Bethany Bale, DR UK Policy and Campaigns Officer, said: “It’s essential that Hate Crime legislation is consistent. Not only is it unacceptable that Disability Hate Crime is not currently a criminal offence, but the fact that other hate crime is, causes unnecessary confusion for victims. Especially for those with an intersectional experience. Victims of hate crime must be empowered by the law, not confused by whether it offers them protection.”

Government still not implementing PEEPs

A recent Insider article has highlighted that Disabled people are still facing barriers to accessing emergency evacuation plans in their home.

DR UK has previously written to the Home Office regarding our concern that the contract to re-write fire safety guidance post-Grenfell was awarded to an expert who has consistently advised that PEEPs for Disabled people are ‘unrealistic’. Although the official local authority guidance has had parts relating to Disabled people redacted since the Grenfell Inquiry, and recommendations have been put forward to make the implementation of PEEPs mandatory for Disabled residents, Insider found that many individual council websites still include the outdated advice that PEEPs don’t need implementing.

The article also highlights the concerning ableist comments made by the same fire safety expert, and an interview where he confirmed no remorse for making those comments. The full article can be found here.

“We’re just numbers to them” – powerful new report highlights DWP failure to investigate claimant deaths and serious harm

Many people, particularly those with existing mental health problems, find the experience of navigating the benefits system difficult and distressing. This can make people more unwell, sometimes to the point where they feel compelled to harm themselves or try to end their lives.

The DWP is supposed to conduct an Internal Process Review (IPR) whenever its actions may have played a part in someone dying (such as by suicide) or experiencing ‘serious harm’.

However, Rethink Mental Illness, following its July 2021 report Tip of the Iceberg: Deaths and Serious Harm in the Benefit System, has established that only 21% of the Internal Process Reviews IPRs since conducted by the DWP have investigated serious harm.

As self-harm, mental health crises and suicide attempts are more common than suicide. This suggests that the DWP’s internal investigations have a vacuum where most of their work should be.

Rethink has now published powerful new research, based on a survey and detailed claimant interviews, to establish more about the harm people have experienced as a result of their interactions with the benefits system, and how the DWP responded to them.

“We’re just numbers to them” – The DWP’s failure to investigate death and serious harm, highlights the experiences of the people being desperately failed and harmed by the welfare system. Read more here.

Pushed to the Edge: Poverty, food banks and mental health

Last month, the Food Foundation highlighted a sharp increase in the number of people experiencing food insecurity, up from 7.3% of households to 8.8% or 4.7 million adults in the UK.

Disabled people were highlighted as one of the groups most affected, being five times more likely to be at risk from food insecurity compared to non-Disabled people.

Now new research, co-produced by the Independent Food Aid Network (IFAN) and the Joseph Rowntree Foundation (JRF), explores the impact of poverty and food bank use on people’s mental health.

The report, Pushed to the Edge, is based on in-depth interviews conducted with people needing to use food banks in November and December 2021. The interviewees’ history, views, and concerns form the bulk of the report’s narrative.

Commenting on the interviews, the author of the report, Tom Pollard, a Mental Health Social Worker, stressed it was clear that the underlying reason they needed this support was simple and universal: the income they were receiving – primarily from social security – was not enough to cover their basic needs or provide the stability they needed to improve their situation.

In terms of the impact of food insecurity on mental health, the report highlights that many of the interviewees had either developed mental health problems, had existing mental health problems exacerbated, or, at the very least, were showing warning signs of poor mental health such as disturbed sleep and physical manifestations of sustained stress. Read more here.

DWP failing to make reasonable adjustments for UC claimants with mental health problems

A new research report has been published that considers whether the DWP is meeting the needs of people with mental health problems and making adjustments to their service as required by the Equality Act 2010.

The report, by the Child Poverty Action Group (CPAG), centres on Universal Credit (UC) which was promoted in its early stages as a personalised service, providing support to meet people’s needs.

Examples of a reasonable adjustment might be offering a telephone appointment rather than a face-to-face meeting, or offering a private interview room within a busy job centre so sensitive information is kept private.

CPAG explored the experiences of 27 UC claimants with mental health problems and asked them if they were proactively asked whether they needed reasonable adjustments at the various stages on their claimant journey.

However, no claimant it spoke to reported being expressly asked whether they needed a reasonable adjustment. Read more here.

1.2 million more have long-term illness since Covid

Over a third of working-age people in the UK have a long-term illness, with new figures showing a dramatic rise since the start of the pandemic.

Analysis of the Office for National Statistics’ (ONS) labour market status of Disabled people figures by the Observer shows that nearly 14.2 million people in the UK aged 16 to 64 said they had a health condition lasting for at least 12 months in 2021 – a rise of 1.2 million during the two years of the pandemic.

Between 2014 and 2018, levels of long-term ill-health had risen more slowly, at an annual average of about 275,000 cases a year. Further, around 800,000 more people suffered from mental-health problems in 2020-21 than in 2018-19, according to disability charity Scope. And the number of people with chest and breathing problems has grown by around 570,000.

The latest ONS long Covid data estimates that 685,000 people had symptoms that lasted over a year.

GP Kathryn Bromwich who has long Covid and has become a wheelchair user since her diagnosis told the Observer: “It feels like we’re ignoring long Covid. People in the middle of their lives are getting robbed of their livelihoods, at risk of losing their homes. I can’t fathom why we don’t try to prevent it. But we’re not.”

Changes to benefits set to begin in Scotland

Adult Disability Payment will replace Personal Independence Payment (PIP) for nearly 300,000 people in Scotland this summer following a phased rollout across all 32 local council areas starting on 21 March.

Adult Disability Payment is a new payment for adults under State Pension age who do not already get disability benefits. People who currently receive adult disability benefits through the Department for Work and Pensions will have their awards transferred to Social Security Scotland from the end of August, without any interruptions to their award and will not have to apply for Adult Disability Payment.

SNJ SEND Minister webinar

Special Needs Jungle has this week facilitated a webinar with the SEND Minister, Will Quince MP, ahead of the publication of the SEND Review. It joined with the NNPCF, Contact, and Family Fund as parent carers asked searching questions of the Minister on a wide range of topics.

No one expected Mr Quince to reveal the content of the Green Paper, due this month, but as a first exercise in engagement it was interesting to contrast this with the previous reforms starting in 2012. This time round, parents are more knowledgeable, more vocal, more cynical, and, unsurprisingly, a hell of a lot more angry.

The good news is that unlike all his predecessors since Ed Timpson, Mr Quince appears to be willing to speak to parents openly and seems to have a genuine desire to help Disabled children, young people and parents/carers. Nevertheless, he admitted that parents are not likely to get everything they want because, no matter how good his intentions, there are many others holding purse strings and power who have other priorities.

Watch the webinar here.

DR UK and Bus Users UK launch accessibility audit

Following a successful series of events in September 2021, Bus Users UK in partnership with Disability Rights UK is launching an accessibility audit for bus and coach operators.

The aim is to identify what operators are currently doing and plan to do, to make their services more accessible to passengers and local communities. The results will be shared with passengers, operators and the wider industry to highlight best practice and innovation and identify any gaps in provision for future development.

Stephen Brookes of DR UK said: “We welcome this project as for too many years disability access to many buses has been very limited if possible at all, but we are seeing a newer range of vehicles which means that Disabled people can now access services to make day to day lives far easier.”

Access the audit here.

Bus funding welcomed with caution

DR UK has offered a cautious welcome to the Department for Transport (DfT) announcement that the bus industry in England will receive a further six months’ recovery funding beyond the planned end date for the Bus Recovery Grant (BRG) on 6 April.

Over £150m has been allocated by the Transport Secretary. He says that the money “represents the final tranche of pandemic-related support to operators,” and adds that is intended to help them and local transport authorities to adapt to changing travel patterns and help the continued delivery of Enhanced Partnerships and Bus Service Improvement Plans as part of National Bus Strategy for England work.

DR UK’s Stephen Brookes said: “The funding will ensure that the many Disabled people who depend on bus services for day to day needs can continue to use vital public transport services.”

The DfT says that over the coming months, operators will be working closely with local authorities to plan future bus networks and introduce plans to grow passenger numbers.