Life journeys disabled young people

This report catches up with the same individuals from our Transition to adulthood report.

2 years later, we want to see if there have been any changes in the important points raised in their first interviews.

Living arrangements

The participants either lived at home with their parents, with housemates or alone.

Who they lived with was a big source of emotional, and sometimes physical support. The people they lived with had a huge effect on their mental and physical wellbeing.

Main findings

Limited choice

When looking for accommodation, disabled young people’s choice is limited by accessibility, affordability and location. Having to finding somewhere near public transport or shops.

Financial security

Some disabled young people are having to live with others to keep rent costs down or live at home. The emotional burden of budgeting is tough.

Accessibility

We know that Accessible living is important for young disabled people to live independently. Adaptations and accessible homes often come at extra cost.

Independence

Disabled young people felt independent, regardless of their living situation, at home or with others.

Relationships

Disabled young people on benefits felt they had to make difficult decisions between living with their partner and losing benefits

Living in shared accommodation

A's experience

A is a wheelchair user who has recently moved to a larger city. A’s social life has improved as the opportunities to socialise have increased. This is due to more accessible transport making it easier for A to travel. 

Although moving to the city has improved A’s life and independence, A’s financial situation remains challenging. Unable to find suitable employment.

As well as relying on benefits.

Some of the rules around benefits prevent her from having romantic relationships.

Living with family

Adam's experience

Adam works full time and he feels supported. This has allowed him to gain the confidence and independence to consider moving out of the family home in the future.

He's parents are an important support for him, both emotionally and financially. He aspires to stay in the hospitality industry and live by himself.

He worries about being able to look after himself, living on his own. 

Although Adam has fears about looking after himself. He's job gives him the skills to be able to live independently. Including confidence and knowledge to complete practical tasks. 

Living alone

Jessica's experience

Moved to a new area for work which meant that she left behind some of her support network. Overall, she is happy with the move and loves living by herself.

She values her independence but has support in place in case her fluctuating condition worsens.

The hassle of switching to a different NHS trust was enough to make her feel as if she should not have moved.

She has faced discrimination from people who have said that she is too young to be disabled and had to go without her essential medication for months.

Experience in education

Most of our participants were in higher education in mainstream institutions.

There was a variety of experiences in the group, but these are some of the important themes.

Main findings

Limited choice

Some universities did not have the facilities to support disabled students or support they provided was restricted. This required disabled young people to live near their family or healthcare providers.

Positive support

Disabled young people had positive experiences with helpful advice centres, tutors and note takers.

Lack of support

Some disabled young people experienced accusations of laziness from lecturers, if they struggled to attend lectures or needed materials before the lecture.

Accessibility of campus

An important factor that made disabled young people feel unequal to their peers.

Friendships

Friends they could confide in about their conditions was an excellent source of emotional support.

Choice and support

Melissa's experience

Melissa felt that her choices were limited when she went to apply for colleges as only a limited number had the facilities that she required.

She also felt that there was a general lack of awareness from staff regarding disability.

Unmet needs

Kashif’s experience

Kashif has not had the support that he needs from his university. He feels that they reluctantly offer to print off the slides he needs for lectures and expect him to walk across campus to pick them up.

Moving into employment

Our participants working arrangements varied and included:

• permanent employment
• working towards a career
• in part-time work while they studied
• looking for more permanent positions

Main findings

Independence

Earning their own money or working towards a career made our participants feel independent.

Support

Feeling supported at work was incredibly important. This included being given responsibilities, being part of a team and flexible working.

Limited choice

Those having difficulty finding work felt there was an inconsistency between the jobs they wanted, and those that they were offered.

Discrimination

Some disabled young people felt if they disclosed their impairment during the hiring process, they did not get offered interviews or the job.

Jennifer's experience

Jennifer is struggling to find suitable employment as she feels too overqualified for low skilled entry level jobs but not skilled enough for higher level jobs.

Jennifer has little experience with job interviews because she often doesn’t receive a response from employers.

Jennifer would like some legal advice about her disability rights and what employers are allowed to do when recruiting.

Jennifer plans to go back to university nearer to home, where she can commute. She wants to continue studying politics, but she is probably going to have to repeat the second year to have sufficient grades to move on.

After her recent experience of job searching, she’d like to gain some work experience while at university to better prepare her for a career.

Conclusions

Independence looks different across disabled young people’s lives, whether at home, in education or employment.

We discovered many barriers and enablers that affected disabled people’s experience of becoming an adult. These also effected their feelings of independence and equality.

Limitation of choice and accessible environments

Restricted choices in home life, education and employment were a common barrier.

Home life

Some disabled young people had a strong sense of freedom and independence when they moved away from their family home.

But accessible living costs more and it can be challenging to find the right facilities and support. This can lead to a restricted life, limiting their personal and professional lives and aspirations.

Education

Disabled young people had similar experiences in education, with a lack of disability related support and facilities. This meant that some left education or decided not to go.

The limitation of choice in their place of education left these young people feeling “unwanted” or “not good enough”. Negatively affecting their confidence and aspirations.

Those that went to accessible institutions and had the relevant support, felt optimistic about their academic achievement and career goals.

Staff attitudes, culture, flexible learning and accessible university campuses were all important for an equal experience.

Employment

Disabled young people moving into employment have often had their confidence knocked from experiences in education.

They also experienced a limited job market, having difficulty getting interviews and jobs for roles appropriately skilled for the career ambitions and support needs.

Appropriate support and flexible working from employers are crucial for disabled people to find and stay in work.

Openness and support made disabled people feel secure and satisfied in their roles.

Financial security

Besides taking on the extra financial responsibilities of adult life. Disabled young people face extra costs. Accessible living costs more which often mean leisure activities are sacrificed.

Extra costs and living arrangements

Higher costs to live alone compromise living arrangements for disabled people, particularly when they can manage their condition better living alone.

Some disabled young people have had to adapt to shared accommodation when it is not suitable.

This can create extra effort:

• repeatedly explaining their condition to housemates
• engaging with household chores at unsuitable times for fluctuating conditions

Which can leave disabled young people feeling misunderstood and uncomfortable in their own home, negatively affecting their overall wellbeing.

The additional cost has also meant some disabled young people have decided to stay with family, despite wanting to move out.

Our research tells us that moving to a more accessible home results in a better quality of life.

Extra costs and work

Disabled young people are mindful of working harder to build job security and a successful career so they can have financial security.

Attitudes

Many disabled young people experienced negative public attitudes that were specific to their age group. They believe there is a general lack of awareness and understanding about disability.

They report experiences of the public making assumptions and stereotypes about disabled young people faking their condition or being lazy.

Attitudes and education

These attitudes extend to education, particularly when requesting materials and flexible ways of learning.

• Staff lack trust in disabled young people and assume laziness when asking for materials before a lecture or online.
• Inflexible culture, requiring physical attendance to lectures.

These attitudes negatively affect disabled young people and prevent them from progressing with their studies.

Low expectations from staff discourage disabled students, and this has led to some disabled young people leaving education.

Attitudes and employment

By the time disabled young people move to find work, they have already had their confidence knocked by negative attitudes in education. They face a limited job market and a lack of understanding about disability employment.

Improving understanding of disability support and facilities will empower staff, helping them nurture the needs of disabled young people, supporting their aspirations and career goals.

Support

Disabled young people rely on informal structure of support, such as family and friends who understand their condition. For some it is important to live with friends and family to feel supported in their daily lives.

More formal structures can also be important, for example:

• medical professionals
• support workers
• disability staff in educations

The right support enables disabled young people to feel independent.

Independence

Home life was directly related to independence and moving into adulthood, regardless of living arrangements.

For some this meant parental support while they developed the confidence and knowledge to live independently. This was emotional and financial.

Those that moved away from their family home felt that having their own space suited their needs. And allowed them to live independently.

Those needing accessible living, often faced a more expensive option, creating a barrier for many disabled young people.

Societal support structures

Societal structures come in many forms.

• Parental support
• Housemates and friends

And more formal networks, such as:

• Lectures, course materials and exams
• Education staff
• Disability support officers
• Managers and work colleagues

These networks and relationships allow individuals to live the life they choose; in the way they choose.

This group of disabled young people show remarkable resilience and ambition, despite the barriers they face.

They are fiercely independent even when their lives frequently require extra costs and effort to navigate barriers in society.

We will continue to follow their life journeys as they find their own sense of independence.