What comes after education?
Transitions to adulthood for disabled young people
Too many young people with disabilities face a difficult future once they leave education.
The adult social care system is so broken that it is having an incredibly detrimental effect on young people with disabilities, especially those who access specialist education.
This report, based on research by charities National Star and Together Trust, reveals the incredible obstacles young people and their families and carers face. It involved hundreds of parents, carers and young people to better understand their experiences, emotions and needs.
Young people with disabilities have the same aspirations as their peers. They want to choose where they live, what they do and how they fill their days.
This report shows that, instead, they are often not living where they want, experience loneliness and isolation, and are waiting far too long for the right support.
Key stats
4 in 5 parents (80%) did not know what was supposed to happen when their son or daughter left education.
2 in 5 young people (39%) didn’t feel listened to when preparing to leave school or college.
More than half of young people (55%) felt worried about leaving school or college.
More than half of parents and carers (51%) were not kept up to date if plans changed about their son or daughter’s transition from education.
Foreword
by Sharon and Carl
Parents of Daisy
“We were so very proud of our daughter Daisy when she left education at age 21. She had attended a specialist further education college as a residential student.
During her time at college, she was transformed from a teenager into an independent and confident young woman.
“Daisy moved into residential care after college, but we had to remove her due to serious concerns about the care and support she was receiving. She remains at home though she still dreams of being able to ‘live in a house with friends, but still see mum and dad’.
Daisy happily attended a group based in the community, but that closed due to funding and the pandemic. She moved onto a different group which was part of a college. Then, without warning, it also closed due to funding.
There is a severe lack of alternatives where we live. The local authority provides just two-day centres. Daisy has tried both, but neither are suitable for her. Why should day centres, with a very broad mix of ages, be the only alternative for her after education?
Daisy needs structure and routine. While we have some private groups in our community, they all struggle with funding. Some don’t accept wheelchair users. Others don’t provide personal care.
“Daisy deserves more. She has so much to give but society doesn’t see her potential.”
We have become more and more responsible for Daisy’s care and activities. We could not get respite. Daisy was unhappy. We were exhausted. It came to the point where, in my darkest moments, I thought of taking Daisy to social services and saying “here she is, you look after her 24/7. I can’t do this anymore”.
We love her so much and we would do anything for her, but you can feel alone and that no one is listening. All those independence skills Daisy learned at college slowly ebbed away. It was heartbreaking to watch.
There have been some glimmers of hope. Daisy can now access respite, where they understand her, and she feels she can be herself. It provides us with the rest we desperately need. She also attends activities two days a week, but that has been a difficult fight.
Daisy deserves more. She has so much to give but society doesn’t see her potential. They only see her as an expense, what it costs to provide her care and support.
I constantly worry about Daisy’s future. Why shouldn’t she be able to live where she wants, meet her friends and do the activities that bring her joy?
This report tells the stories of parents like us and young people like Daisy. It highlights how the system is letting down our young people and what needs to be done to ensure adulthood is meaningful and happy, not one crisis after another. Isn’t that what every parent wants for their child?”
Our findings
Finding 1
Young people do not feel listened to
Statutory guidance is clear. For every young person there should be a plan, and that plan should be built around the views of the young person.
A startling number of young people told us that they didn’t have a plan in place for leaving education (45%).
Less than half of parents and carers (46%) said they felt partially or fully listened to.
Parents and carers told us that they were worried that their child would end up living somewhere unsafe or without proper support unless they became full time advocates.
What we want to see happen
Statutory guidance must be followed to enable all young people to contribute to their own transition plans.
Ensure that no young people with disabilities live in unregistered accommodation without proper oversight from regulators.
“There are no clear paths for young people with SEND, and the horror stories we see in the press about the abuse of young people in care homes is frightening.”
Finding 2
Young people feel worried about leaving education
Our findings show that there is a significant positive effect on young people’s feelings where they have a transition plan in place and feel listened to.
Preparation for transition to adult life should be taking place both in school and at home, yet our survey shows that the vast majority of parents and carers don’t know what to expect as their child leaves education.
Because of the uncertainty, it is hard for parents to accurately communicate with their son or daughter about the future when so much is subject to change.
55%
young people surveyed said that they felt lonely
33%
young people surveyed feel worried about the transition process
76%
parents and carers surveyed said organisations did not work well together
“Professionals were generally quite knowledgeable, but only about their own area, which inevitably leads to gaps. Other parents ahead of me filled those gaps in.”
What we want to see happen
The process for planning transition should be consistent across England and transparent for young people and their parents/carers to navigate.
Transition planning should commence early, with children’s services working in partnership with adult services several years prior to transition
Finding 3
Young people need access to meaningful activities
It’s essential that young people are provided with the opportunity and support to continue to do the activities that they find meaningful into adulthood.
In the UK ‘disabled adults report having little choice over their free time compared with non-disabled adults’.
One of the main things we aimed to capture with our survey was what activities young people themselves saw as worthwhile after leaving education.
The responses were extremely varied, but broadly fell into three categories: quality of life, employment, education and training, and hobbies.
Some parents and carers told us that meaningful activities were especially important, as their child experienced anxiety and pressure related to working.
“My favourite thing to do is to walk my dog, read books with my screen reader’s help, watch TV, and write my own poems.”
“I want to learn how to drive, get a camper and then travel the country on my own. My mum says it’s probably to escape people as I’m selective mute and autistic.”
What we want to see happen
There should be a full review of ‘day services’ as many have closed due to being underfunded and there is a demand for activities and community services which is unmet.
Central government should review provision for working age adults whose disability prevents them from entering paid or voluntary employment.
Finding 4
Young people want to choose where they live and who they live with
Findings from our survey highlighted that many young people want a greater level of autonomy in their living arrangements, as well as the opportunity to explore creative or flexible living arrangements, such as living with their friends or their partner.
Right now, there are limited housing solutions for young people with disabilities, particularly in rural areas.
This can lead to young people being placed in accommodation far from families and support networks, even when it’s not in their best interest.
Worry about where their child will live was expressed by many parents and carers.
Living arrangements directly impact a young person's sense of independence, security, and control over their daily life.
More than half of young people (51%) are not living in any of the places they would like to live.
Over half of parents and carers (66%) said that their son or daughter didn’t get the overall outcome they wanted - and housing is a crucial part of this.
“I wanted to live in a house with friends. I lived for three weeks in residential care and was removed by my family due to abuse and neglect.”
What we want to see happen
Local authorities should proactively seek collaborative housing solutions that involve young people, parents and the community in the design.
Central government needs to work with local authorities to plan appropriate budgets for young people with disabilities across England.
Young people should be able to choose to live in their local area or ‘out of county’, depending on what best meets their needs.
Finding 5
Young people want to be able to work
We welcome the government’s commitment to review the Disability Action Plan, as we believe there is an opportunity to strengthen the approach taken to supporting people with disabilities in the workplace.
It is vital that legislative developments, strategies or targets, build upon a foundation of support for young people with disabilities, and that they recognise the importance of meaningful activities beyond employment, including the vole of volunteering.
Many young people we spoke to said that they want to have the experience of working.
Some had maintained voluntary jobs for a long period of time and the sense of self-worth that it brings. For others, supported internships had offered a real opportunity to gain experience.
“I had a volunteer job at the hospital for three years. I’ve also worked as a volunteer at a school, and at a charity shop.”
“Getting a place on a supported internship was the best thing to happen to [my son]. However, we came upon this by chance. It should be more widely advertised and there should be more places available.”
What we want to see happen
The benefit system needs reform to support people with disabilities into the workforce, including those who will require a job mentor and reasonable adjustments.
Reform is required to develop an easily accessible process to support employers and those seeking work.
Finding 6
Young people want meaningful relationships
After education ends, there is no duty for young people to continue to see friends.
If young people don't go through other life phases like “university”, they are less likely to have close friendships and more likely to experience loneliness.
Access to independent advocacy is especially crucial during key transitions, such as the shift to adulthood.
The issue around isolation and social exclusion can only be addressed by reforming the benefit system to support people with disabilities into the workforce and a full review of provision for working age adults whose disability prevents them from entering paid or voluntary employment.
Concerns about the future were prevalent in our research findings.
Young people surveyed were also concerned about the burdens placed upon their parents and carers as a result of a broken SEND system.
“I’m worried I won’t have anyone when my parents die... I might be really lonely and sad.”
What we want to see happen
The benefit system needs reform to support people with disabilities into the workforce, including those who will require a job mentor and reasonable adjustments.
Access to independent advocacy should be extended to support children and young people with disabilities through key transition points (e.g. starting or leaving school), post-16 pathways, and supported internships.
“I felt like I had no friends outside of college, so I wanted to stay.”
Finding 7
Young people need reasonable adjustments to attend university
Some young people told us that they were forced to delay attending because of failures to make reasonable adjustments, or that they were struggling because of the lack of support.
Under the Equality Act 2010, universities are required to make reasonable adjustments to make sure that disabled students are not disadvantaged.
This includes making sure that facilities, bathrooms and accommodation meet the needs of those with physical disabilities.
“I left school last year to go to university, but I had to take a gap year at the last minute because of inaccessible university accommodation.”
What we want to see happen
Further Education SEND experts should collaborate with universities to support seamless transition from further education to higher education.
Systems and funding need to be made available to promote collaborative partnerships to ensure young people have equality to access higher education and successfully achieve their aspirations.
Finding 8
Transition plans must be proactive and involve the young person and their family
It is presumed that the young person will want to continue to live with their parents and there is an absence of creative housing solutions which would allow young people to live with friends or partners.
At some point, the young person’s transition plan often breaks down, either because their funding runs out or because there aren’t enough trained staff to fulfil their transition plan.
In that situation, professionals are left scrambling to find an alternative placement.
The question of what the young person wants for their own life becomes less important and is superseded by the question of what is available.
A transition plan is made with the young person and their family to outline what should happen after they leave education.
However, as this report has outlined, there is often a focus on getting young people into work, but not on sourcing meaningful activities and facilitating them to maintain relationships with their peers.
“It needed two years of robust and active planning to ensure that suitable supported living would be available for our daughter at the end of the college course. She was always clear that was what she wanted, and it was no surprise, but nobody acted until nine months before she left. Now she has been living in inappropriate temporary accommodation for six months already with no sign of change.”
What we want to see happen
The process for planning transition into adulthood should be consistent across England and transparent for young people and their parents/carers to navigate.
Transition planning should commence early, with children’s services working in partnership with adult services several years prior to transition.
Local authorities should proactively seek collaborative housing solutions that involve young people, parents and the community in the design.
Moving forward
Help us drive change
We believe that we’re much stronger together.
That’s why we want to listen to the experiences of those who have picked up this report, and who have an insight that they want to share about the transition of young people with disabilities into adulthood.
Register your support for this report's recommendations.
Leave a comment about your own experience as a professional or as a person with lived experience of the system.