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BBC“I want to contribute to society. I dream of living with friends in supported living, not far from St James’ Park, and getting a job.”
That was the message from Elliot Caswell, a 19-year-old die-hard Newcastle United fan with quadriplegic cerebral palsy, when I first met him on a flight in 2019.
I could see his determination as he was assisted by staff along the aisle – flying independently for the first time, so he could go skiing.
It was clear he had cerebral palsy, something that was important to me as my younger sister, who also had cerebral palsy, had only passed away a couple of months before, aged 23. Elliot and I struck up a conversation, and it turned out he and my sister had played together as kids.
Being a camerawoman and journalist, I asked if I could follow him as he made the transition into adulthood. Navigating the system as he did so turned out to be far more challenging than Elliot had hoped.
Elliot has cerebral palsy and just wants to contribute to society. He wants to live with friends, with the support he needs, and get a job that pays. But is the system set up to make sure Elliot’s dreams can be realised?
Last year, the then-Conservative government published proposals they said would help more disabled people to work. Former Work and Pensions Secretary Mel Stride said at the time: “We know that many people would like to work with the right support.”
Campaigners welcomed a focus on supporting more disabled people into the workforce, but there were concerns about the strengthening of benefit sanctions, with the Institute for Employment Studies think tank challenging “divisive rhetoric” around the Back to Work Plan.
When I met Elliot he was one of those people keen to enter the workforce after finishing his education.
But now he’s lost hope. So what went wrong?
Education
On leaving school, Elliot had initially been offered a place at a college near home, which his parents said was “wholly inappropriate”. It was for three days a week and designed for people with autism, but Elliot is not autistic. So they took their local authority, North Tyneside Council, to a tribunal.
For disabled people, there can be stark differences in access to quality education.
A study from the Education Policy Institute think tank found there were “deeply concerning” inconsistencies in how children with special educational needs and disabilities (Send) are supported, while disabled individuals are three times less likely to hold any qualifications than their non-disabled peers and face disproportionate barriers to access higher education.
Good practice can include tailored support, assistive technology such as screen readers and adapted keyboards, and physically accessible spaces – but many institutions lack proper accessibility, and some disabled people report that teachers do not receive adequate training, while the costs associated with obtaining accommodation can be prohibitive.
Eventually Elliot and his family won their case and funding was made available for him to attend National Star in Cheltenham, Gloucestershire, where former glamour model Katie Price’s son Harvey had stayed. It is a specialist college that helps prepare young disabled adults for future life.
Ministry of Justice data shows 98% of parents who legally appeal a local authority decision about lack of proper support for their children with Send go on to win the appeal at a hearing.
The move came at a good time for Elliot, as his twin brother and friends had left home for university.
At National Star Elliot enjoyed the benefits of a full Education, Health and Care Plan, with practical help to prepare for his future, occupational health, physiotherapy and the benefits of being surrounded by other young adults.
So while Elliot’s college plans did eventually work out, he had to overcome significant hurdles and delays for that to happen.
Finding paid work
After a joyful graduation from National Star in 2022, Elliot moved to Project Choice, a specialist college providing tailored educational support. He was excited about his future and hoped to secure an NHS apprenticeship.
Elliot didn’t want to “sit at home on the benefits system” and wanted to get out, work and meet people, he said.
Work and Pensions Secretary Liz Kendall recently confirmed the government’s commitments to its manifesto Back to Work Plan, which includes plans for more disabled people and those with health conditions to be supported to enter and stay in work.
She said government would be devolving more power to local areas to offer more “joined-up” support.
When Elliot was looking for an apprenticeship, he suffered a series of setbacks that epitomise a system cracking under the strain. Due to the Covid outbreak and a lack of suitable work placements, he was not able to get the work experience he needed.
His mother, Chris, said a lot of placements weren’t satisfactory as he either couldn’t get his wheelchair into them, or they didn’t have accessible toilets. North Tyneside Council says it is not aware of having offered a placement that was unsuitable for wheelchair access. A spokesperson for the authority says it has “worked hard to secure opportunities that are suitable for Elliot’s needs”.
But Elliot wasn’t able to get his longed-for apprenticeship. He was very disappointed.
Elliot is not alone in his struggle to find employment. Disabled people are almost twice as likely to be unemployed as non-disabled people.
Recent ONS employment statistics for disabled people find the disability employment gap – the difference in the employment rate of disabled people and people who are not disabled – is at a similar level as it was before Covid.
Though the proportion of disabled people who are in employment varies considerably depending on the type of disability, in the last quarter of 2023, the gap was 27.9 percentage points.
As Elliot has not been able to get an apprenticeship, his local authority has extended his time in education.
The hope is it will help him develop workplace skills and gain more experience. He is pleased, as he is eager to to do some form of job, even if it’s volunteering.
North Tyneside Council contacted 25 organisations to help him secure a position but acknowledged there were gaps in finding meaningful and accessible placements. Elliot has now joined the council on a voluntary placement in a customer-facing role.
Housing
Finding work can be hard enough when your living arrangements are sorted, but when they’re not it makes it even harder. And for young disabled adults like Elliot who with the right support can live independently, it can take a long time to get suitable accommodation.
Elliot had a two-year wait.
I looked round some of the recommended flats with Elliot and his mum, and saw how inappropriate they were for his needs. Appliances such as fridges and washing machines were not accessible and bathrooms did not meet his mobility needs.
During those two years he was offered six places to live, but each time either his family or the occupational health team found them unsuitable. The council says it has worked with the family at their pace and in line with their wishes and ambitions to find the right home for Elliot.
Chris described the process as “super-stressful” and says it contributed towards her recent heart attack.
It was apparent that there was so much more need than there were suitable places to live.
The lack of accessible or adapted homes for disabled people is a problem – 91% of homes do not provide even the lowest level of accessibility.
Adapting a home that is not accessible does not come cheap. The average award from the government-funded Disabled Facilities Grant is now around £9,000.
Moving in with mates was also just not possible for Elliot as each person is managed as a separate case by a local authority – meaning a flatshare with friends would be difficult to achieve. Even the flats with more suitable facilities involved compromise.
While he waited for accommodation and work opportunities, Elliot moved from college back to his parents’ home, and I saw him lose confidence and independence. I noticed his mum speaking for him often during our catch-up video calls and Elliot admitted he felt “forgotten about”.
Recently he was able to move into a shared house, not with friends his own age but with a non-verbal man 40 years his senior. The living arrangements are working well.
Elliot’s accommodation is near his beloved St James’ Park, and he is delighted to have finally left home. His new place now houses his football memorabilia, and the facilities and care package he has are excellent.
Elliot has also had significant one-to-one support to enable him to socialise with people of a similar age.
“Finding suitable accommodation for any of our residents, especially those with a disability or long-term condition, is a priority for North Tyneside Council,” a spokesperson for the authority says.
But according to Lynette Barrett, CEO of National Star College, many young people like Elliot become young adults with “no clear transition plan” for where they will live.
She said many end up in inappropriate living situations where their needs are not being met and in the worst-case scenario, some see declining health and even die.
“We shouldn’t be in a situation where they are having to fight so hard for the basic things in life that they need in order to be able to live a fulfilled life.”
Eleanor Binks, director of adult services at North Tyneside Council, says the authority works with its partners to provide housing and opportunities for residents like Elliot who have complex needs: “We recognise that we don’t always get this right, but we do listen and care for each individual and will continue to work to adjust their care to meet their needs.”
She adds: “There are challenges across the health and social care sector which can only be overcome with well-resourced changes across the system.”
Calls for change
Elliot is thrilled to have his own place at last, but has found the uncertainty hard.
He has done three voluntary placements, including at a museum. He worked on reception there and is currently doing the same thing for the council.
But Elliot says he has now lost hope of finding paid work.
A House of Lords report published today says that young disabled people face continuous barriers to employment, while they yearn to thrive in their careers. It adds far too many are written off and told that ‘people like them’ can never succeed.
The government needs to focus on providing support ahead of time, ensuring that young disabled people can get work and stay in it once they leave education, and must work with employers to create inclusive workplaces, it adds.
What struck me during filming was how the system as it currently is leaves the likes of Elliot and his family feeling. It doesn’t have the regard it should for his quality of life as he transitions from being a child to an adult.
His twin brother, Lewis, said Elliot had persevered so very hard with the help of his parents but that it “shouldn’t be as much effort” just to have the future he wants. Lewis also has cerebral palsy but it affects him only on one side, meaning he is able to walk unaided, has paid employment, and lives with friends.
Elliot’s enduring determination is an inspiration. But after years of trying to secure his independence, his conclusion is: “You can’t rely on the system to help you.”
Additional reporting by Polly March
Top photo credit: Getty Images
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