EVE SIMMONS: Since 2019, the MoS has reported on the indignities suffered by disabled people. Each time we contacted the Government for comment. Over that time there have been four Ministers for Disability… What have they achieved?
THE MPs pictured here – the present Minister for Disabled People, Health and Work and three of his predecessors – ought to do some serious soul-searching this week.
By Wednesday the current incumbent, Thomas Pursglove, will have received a letter from the All Party Parliamentary Group on Disability – backed by The Mail on Sunday, Mencap and a number of leading MPs and peers – requesting a Commons debate and Government review to examine the systemic failures and dearth of support for Britain’s 11 million disabled people. About time too.
For four years I’ve reported on the situations faced by those with disabilities and their families, as part of The Mail on Sunday’s Dignity For Disabled People campaign.
The stories always shock me: paralysed pensioners forced to move to the other end of the country for a house that fits a wheelchair; severely disabled children denied care because they are ‘too heavy to lift’; young people with brain injuries shoved in old people’s homes – one, aged just 25, was placed in the same home as his grandmother, who had dementia.
With each story I am struck by the superhuman resilience of people affected: each day is a struggle against seemingly insurmountable odds.
The current Minister for Disability, Tom Pursglove has been the MP for Corby since 2015. He has been in the role for the past four months and is too busy to speak about the scandalous treatment of disabled people across the country
It’s not just the challenges of disability itself – though these can be many; it’s the fact that the system meant to support our most vulnerable often seems utterly stacked against them. Many don’t get even the most basic support.
Ultimately, some can’t cope. One mother-of-three I spoke to was left to care alone, without help, for her eight-year-old son who was blind, partially deaf, autistic and required tube-feeding. She was eventually hospitalised after collapsing with exhaustion.
Last week we published the story of BBC veteran reporter Humphrey Hawksley, whose son Christopher survived a life-threatening illness as a baby but was left severely disabled.
Now 26, he’s technically homeless, because local health chiefs can’t find a care facility to deal with his complex needs. Christopher has been forced to stay in an emergency facility where he sits alone all day, sometimes clawing at his own face in frustration. Heartbreakingly, Humphrey now wonders whether his son would have been better off dead.
The case of Olga Freeman still haunts me: a mother suffocated her ten-year-old autistic son to death after struggling for years with inadequate support from social services. She is now ‘indefinitely’ locked up in a psychiatric hospital.
We didn’t have a chance to contact the next Minister – Claire Coutinho. She was in the job for only a month, between September and October 2022
To be honest, I’m amazed things like this don’t happen more often. But more to the point – how, in a civilised society, can they go on?
I had hoped, when shown some of these cases, that the Ministers for Disabled People (these four since our campaign began) would share my horror and want to act immediately. How wrong I was.
In November 2019 we called on Justin Tomlinson, who held the post until September 2021, to act.
We had published the story of two-year-old Jaxon Jones, a disabled toddler who faced having his care withdrawn even though his condition meant he was at constant risk of suffocating to death on his own vomit. Mr Tomlinson’s office at the Department for Work and Pensions got in touch the next day – but only to tell us we should, in fact, direct our campaign to the Department for Health and Social Care (which didn’t seem that interested either).
After Mr Tomlinson came Chloe Smith. She said, in a statement to this newspaper, that she was ‘proud’ to have ‘delivered a lot’ to help disabled people in her role.
In June, we contacted her after paralympian and disability campaigner Dame Tanni Grey-Thompson wrote about disabled people on planes. With no staff to help them, people were forced to drag themselves down aisles to get to the toilet or were left stranded for hours.
Chloe Smith, pictured, said in a statement to this newspaper, that she was ‘proud’ to have ‘delivered a lot’ to help disabled people in her role
Ms Smith provided a quote: she felt ‘passionately’ that all transport should be accessible for everyone.
And then she passed the buck: ‘The Department for Transport and the Civil Aviation Authority have been clear with industry on the support they are expected to provide to disabled passengers when travelling by air.’ I tried to get Ms Smith on the phone to ask what she was doing to ensure this, but she couldn’t find the time to talk.
We didn’t have a chance to contact the next Minister – Claire Coutinho. She was in the job for only a month, between September and October 2022.
Next came the new boy, Mr Pursglove, who has been in the role for four months. I approached him last week to ask if he’d speak to us about Humphrey Hawksley’s issues. He also didn’t have time to talk.
However, a department spokesperson simply commented: ‘We are committed to ensuring disabled people have the same opportunities for appropriate housing as everyone else.
‘Since 2010 we have invested £4.8 billion to deliver around 490,000 home adaptations. We are also boosting the supply of accessible homes to help disabled people live independent and fulfilling lives.’
In November 2019 we called on Justin Tomlinson, who held the post until September 2021, to act
As an aside, Humphrey also wrote that his own MP in Hammersmith, Labour’s Andy Slaughter, hadn’t been much help either. However, Mr Slaughter eventually did the decent thing and got in touch to apologise, and say he wants to help.
The £4.8 billion spent on housing adaptations seems a lot. The NHS also spends roughly £5 billion every year on health and care costs – including residential facilities – for people with long-term conditions, including those with disabilities. And roughly £12 billion is spent by local councils on social-care costs for working-age adults – three-quarters of which is dedicated to those with learning disabilities.
That’s more than a tenth of what the NHS spends in an entire year.
And yet, just five per cent of disabled people feel health chiefs are providing adequate support, according to a Government survey. Is that money being well spent? Hopefully the Ministers responsible will be forced to answer that question, if and when the review happens.
It is true that there have been improvements in employment prospects for the eight million working-age disabled people in the UK. Since 2017, an extra one million are working, thanks to schemes connecting vulnerable adults and employers.
Chloe Smith also secured a £150 one-off payment for six million disabled Britons to help with the rise in the cost of living.
But this will be of little benefit to the people in our articles, who are desperate for carers, some trapped in a single room in their home – unable to get to a lavatory and forced to use a bucket.
Officially, the Disability Minister, who sits within the Department for Work and Pensions, only covers issues relating to employment and benefits. I’d argue the title – Minister for Disabled People, Health and Work – suggests otherwise.
The majority of challenges facing disabled people straddle health, social care, housing, the benefits system and transport. And if the Minister for Disabled People can’t help, who can? No one, it seems.
This is why we are now demanding action. The letter, from Lisa Cameron, Chair of the APPG on Disability, will demand that Ministers from all relevant Government departments attend the proposed debate and participate in the review. She says: ‘The focus is only ever on one part of the puzzle – social care, health or housing – but politicians are not considering everything as a whole. If we can get Ministers to acknowledge that all departments need to be involved in a plan, that’s the first step to proper change.’
Four influential politicians are backing our initiative, including former Health Secretary Lord Lansley and Baroness Altmann.
The need for action is pressing. ‘Last week we had calls from a man with learning disabilities who is newly homeless and an elderly couple who have been forced to pay for their disabled daughter’s care,’ says Jackie O’Sullivan, executive director of communication, advocacy and activism at Mencap. ‘Some families know to call us, but a lot don’t and they fall through the cracks. Do we really want to live in a society that allows this to happen?’
In a statement, a Government spokesman said: ‘We have reached our goal of seeing over one million disabled people move into employment five years early… and provided billions of pounds of financial support through the benefits system.’
Dreadful cases ministers simply side-stepped
Disabled toddler Jaxon Jones’s story from November 2019
This story highlighted the inaction at the heart of government to the suffering of disabled people as part of our Dignity for Disabled People campaign
Omar Moustapha’s story was highlighted on September 12, 2021
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