Engaging tomorrow’s leaders in today’s policy ecdp Future Focus 2013-14

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About ecdp and Healthwatch ecdp is a Disabled People’s User Led Organisation representing the voice of disabled and older people, across all impairment groups in Essex. Our origins are firmly rooted in a belief that the lived experience of disabled and older people, both as individuals and collectively, is vital if their lives are to be enhanced. Our peer-to-peer programmes can help disabled people to acquire a mentor, share skills with the community, navigate the health care system, or find and stay in employment. We help people to access personalised social care through advice, support planning and a payroll service for those employing Personal Assistants (PAs). Healthwatch Essex is a new independent voice for the people of Essex, helping to shape and improve local health and social care services. This includes doctors, hospitals, disability and mental health services, home care services, support for carers, care for children, the elderly and frail. It also takes in public health services like vaccinations and sexual health clinics. By gathering people’s voice and lived experience of health and social care services, we can build a picture of where services are good and where they need improving. We have powers in law which mean we can influence decision-making at a local level, and can ensure the voice of the people of Essex is heard.

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What we did

In January and February 2014 ecdp delivered a series of Future Focus events to discover the experiences and opinions of young disabled people in Essex. We were funded and supported by Healthwatch Essex for this work. We developed a twin-track approach to consultation, listening to 61 young disabled people in total. Consultation was conducted through face-to-face focus groups and online social media discussion. We met, listened and consulted 44 people who identified themselves as a young person experiencing disability in Essex. We consulted a further 17 young disabled people through a follow-up online survey via social media. The e-engagement provided valuable support for our previous findings from the earlier focus groups. This report draws together our findings. We identified the key barriers, challenges and enablers that young disabled people face today. We aim to ensure these voices are heard so that decisions about disability are not made without the input of disabled people. Future Focus empowered young people to celebrate their unique skills and diverse strengths and to consider how these skills have immense significance in shaping future solutions to enhance the lives of disabled people.

‘It’s all relatively new to me and the future can be quite daunting, knowing whether life will be good again. Now I know I can be me again but even better.’ The events also gave young people a chance to meet one another and to develop a peer support network drawing on shared lived experience.

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Method We held 4 focus groups across Mid Essex, North West Essex and South Essex, talking to 44 young disabled people. The four sessions engaged with the following impairment groups:

• A pan-impairment group at ecdp, Chelmsford

• A mental health group at The Jubilee Centre, Southend

• A learning difficulty group at Columbus College, Chelmsford

• A physical and sensory group at Thaxted Centre for the Disabled, Thaxted

Louise Hunt, a Tennis Paralympian and Office for Disability Issues Young Ambassador attended these events. Louise shared her experiences and expertise with the groups and helped collect valuable insight. Each session ran for five hours and included team building activities and an inspiring talk from Louise, alongside the focus group. ‘I came away feeling really good in the fact that I have a group of people who understand what it’s like to have a disability.’ The first session, held at ecdp, was named the Dave Matthews event in honor of ecdp’s long-standing Trustee who passed away in 2013. Dave was committed to making the voices of disabled people heard, and this work is dedicated to him. ‘Through groups like this at ecdp I get the help I need and my impairment is more recognised.’

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What we found

Five main themes emerged from the focus groups and were confirmed via the online consultation. These were:

1. Service, shop and transport access and understanding

2. Attitudes and perceptions and the need for role models

3. The desire to work and education

4. The need for more accessible sport and social groups

5. Health and social care

1. Service, shop and transport access and understanding Access is still a big problem for young people who experience disability. There is a general consensus that, although in recent years there has been a greater awareness of disability and improved access, disabled people still experience many and varied barriers. There are mixed opinions about public transport. Transport has improved in Essex where staff have become more willing to help and have more knowledge about how to help. In particular, some people felt that bus and taxi services were improving, especially for people with physical impairments. However, others had negative experiences. ‘I have been refused to go on the bus three times because there was a buggy on the bus.’ Some people felt that service providers had almost washed their hands of access needs and forgotten about disabled people after making limited improvements. ‘I still feel a burden to transport services.’

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For the most part, negative experiences were due to a lack of education and training for transport staff. Looking across all services, people felt that staff needed more training to use technology and equipment to accommodate people who experience disabilities.

Bad architecture and town planning still cause problems for many wheelchair users. They described using disabled parking spaces with no dropped kerbs or disabled spaces lacking hatch lines on both sides of the space, leaving insufficient space for a wheelchair between their car and the next. London Underground and National Rail have some stations that are inaccessible to wheelchair users, meaning that individuals can only travel so far. At some train stations there are no lifts in service, decreasing access dramatically. ‘I regularly work in London and I have to give the train stations 24 hours advance notice because I am a wheelchair user…Why?’

Case Study One young person was unable to board a bus due to the bus not having a ramp, or the bus driver being unaware how to use it.

Case Study One visually-impaired young person recently went to Southend Football Club to watch a match. He said the stewards didn’t know how to direct him to the disabled area or where the headsets were. He said even though these considerations were in place by law, he could not benefit from them because staff were not trained properly.

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Some disabled people are prevented from being spontaneous in travelling: commonly, people reported being refused access to a transport service if they were travelling alone. At many stations you have to book a week in advance to use the train so that staff are available to help with your travel. ‘A coach company wouldn't let me go even if I loaded the scooter myself, because I was travelling alone. Access is undoubtedly more of a problem if one does not have a partner.’ People agreed that the technology used in other services needs some improvements. Touch screen ATMs, for example, are very difficult for visually impaired people to use.

Gym access was also a common theme. Frequent experiences included finding another person in the disabled changing room because there are many keys that fit the lock. This understandably creates panic and deters people from returning. Some disabled changing rooms are too far from the pool and wheelchairs are not allowed in the space in between. People concurred that it seems as if the facilities for disabled people are often in place but the location of the facilities has not been thought about practically, rendering them impractical. Many agreed that it is the little details that need improvement, for example high mirrors in gyms or steps up to an otherwise accessible bowling alley. ‘There are still access problems with regards to shopping and some schools. It is difficult to find a cinema that regularly has subtitled performances; if they have subtitled performances, they are not openly advertised.’ The access needs of people with hidden impairments are felt to be forgotten. Many shops and services do not know how to respond to people with learning disabilities which can sometimes aggravate situations: for example, if a person is unable to answer a question they are interpreted as rude. ‘People often think you can only have a disability if they can see it. I have had train station staff be very rude and accuse me of lying when I've needed to use step free gate.’

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The general consensus was that the public can be ignorant and see the disability not the individual. ‘I am a young woman in early twenties with no chair. I have had people be very rude when I've needed to access facilities (staff and passers by).’ ‘People barge right past me, without seeing me.’ One suggestion was that larger shops and services could have someone trained and responsible for supporting people with disabilities. There needs to be someone to go to if a problem occurs and a space for people to go to calm down that isn’t just the shop floor. This is particularly relevant for people with hidden impairments, such as autism and asperger syndrome. Service providers and shops might need support from organisations like ecdp to make themselves accessible to everyone. With more awareness, shops and services can be open to all in the community. ‘Shop assistants treat me as if I was mentally impaired rather than deaf.’ ‘Shop employees should get disability training at the earliest opportunity.’ Some of the group had experience of mainstream education. They agreed that their schools had little understanding about disability and different access needs. For example, some people said that mainstream schools did not provide enough support for blind students to accommodate their different way of learning.

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‘People tend to panic when I tell them about my health problems but really there is no need.’

Figure 1 from the follow-up online consultation shows access is still an important issue and still causes problems to young disabled people, despite improvements in recent years.

Figure 1: Responses from the follow-up online survey. Higher values indicate the more people agreed with the scale responses.

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To what extent do you agree that there are still a lot of access

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Case Study One young person described how her mainstream school would not allow her to do physical education. She desperately wanted to join in but had to sit out of lessons in the cold, which is bad for her impairment. She suggested that one of the reasons may be that they did not know how to cater for her. Another reason was insurance: the school was worried about being liable should she be injured. She found this exclusion very distressing. She thinks teachers need to be trained to accommodate her needs. At the time she felt like her exclusion was her own fault.

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2. Attitudes and perceptions and the need for role models The majority of people thought that attitudes and perceptions towards disability need to be more positive. Many said we need role models who experience disability in the media limelight. For many, the attitudes and perceptions of others were the focus of both their biggest concerns and biggest hopes for the future. It was one of the most important issues to young people who experience disability. ‘There are still stereotypical views of disabled people in society, myths such as disabled people are dependent on professional services offered to them by non-disabled people. But there are changes, positive and empowering changes, albeit at a snails pace.’ For many, talking to peers and role models gives strength. People are hopeful that more media coverage of people with disabilities could help shift attitudes. Coverage of the Paralympics brought disability to the forefront instead of shutting it away. People hope that society will become more open and its members more relaxed with one other and less anxious around disabled people. They are hopeful that they will be treated as equals and be treated the age they are. Some parents expressed a wish to stop being seen as ‘special’. People agreed that they feel slightly on the margin of the community. The majority of people said that many services, including hospitals and shops talk to the person they are with rather than them, making them feel invisible. ‘When in the wheelchair people talk to my husband about me as though I don’t exist.’ In shops, for example, cashiers frequently give the change to the Personal Assistant (PA), the friend or family member and not the young person. Again, people think this is because staff are not trained and are nervous about dealing with a disabled person. There needs to be more public awareness of disability and more

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education about seeing the individual first and not the impairment. If you change people’s behaviour you often change people’s attitudes and vice versa. ‘A lack of understanding leads to ignorance.’ People still experience discrimination, prejudice and ignorance. This, for example, can be manifested in religion. Some people have experienced problems stemming from a belief that mental illness is a punishment. Some have experienced certain groups advising people with mental health conditions to go to religious meetings to ‘fix you’. Some feel like they cannot explore their religious beliefs due to beliefs that their condition is their own fault and needs to be fixed. Media and language can be significant in enhancing the stigma of disability. It is seen to portray disability in a very negative light, especially for mental health conditions. Terminology like ‘bonkers’ or ‘nuts’ enhances stigma further. However, this language can be personal, with people in the group admitting they call themselves crazy and nuts, reclaiming the language in a way that might neutralise it. In other cases language has gone too far the other way and becomes paranoid (hospitals now call patients service users). The ideal scenario is finding one language that is acceptable. Young people experiencing mental health conditions are hopeful that if more thought is given to mental health conditions, starting in schools, there will be better access and better understanding. It is recognised that there has already been a brilliant shift in attitudes but there still is a long way to go. Role models in the limelight and leaders are seen as the main driving force for attitudinal change. People want to see more of disabled leaders across different occupations, not just sport. ‘I would like to see disabled people as part of the story in films etc, where the fact that the person is disabled is as relevant as the colour of their eyes.’

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Figure 2 shows that the need for more disabled role models in the media attracted the most positive response in the online consultation. 94.1% of people thought role models were needed.

Strongly Disagree

Disagree Slightly Disagree

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Agree Strongly Agree

There needs to be more young role models who experience disability in the media limelight.

0% 0% 0% 5.88% 5.88% 35.29% 52.94%

Table 1: Response percentages

Figure 2: Responses from the follow-up online survey. Higher values indicate that more people agreed.

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3. Work and education The majority of young people consulted had a desire to work and some had paid employment. People recognise that it can be hard to find work if you are disabled or not. However, there is a general view that work places have a negative perception of disability. Several people have experienced companies refusing employment because they lack insurance for people with disabilities. Many had sought help from jobcentres and, of those, most had been directed towards jobs that were not relevant, i.e. offering a job seeker with cerebral palsy building work. Many feel that advisors do not bother to understand their history and needs. Some had asked for help with interview techniques and had none: they found the whole experience very negative. There is a consensus that disability advisers lack knowledge of disability. ‘I would love to work but who is going to take on someone that can only get out of bed on a good day?’

Case Study A young person went on an animal care work placement. She has cerebral palsy and Obsessive Compulsive Disorder (OCD). Due to a lack of understanding of her condition, the employers commented on her not working quickly enough. She also found it difficult to use tools. She was marked down on the placement due to capability and she felt frustrated. She said the placement could have been more accommodating, both for people with disabilities and without. She is now looking into occupational therapy assistant roles. When she explained her interest to the jobcentre, they were negative. They thought she wouldn’t be strong enough to help people with new chairs and were worried she wouldn’t work fast enough. They said it wasn’t feasible and didn’t offer any other alternative types of occupational therapy. She believes that disabled people need more Access to Work-type support when looking for work.

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Young people who experience learning disabilities want more opportunities to work, volunteer and go on work placements. They want more of a chance to grow and progress within a job: they feel that employers do not see their potential. The wish for more volunteering opportunities was echoed by many. ‘It annoys me that the only jobs going for disabled people at big supermarkets are trolley boys, there needs to be room for progression.’

Many people report feeling assessed, tested and analysed too often in the job-seeking process. The Employment and Support Allowance (ESA) assessment feels too invasive and personal. Some assessors seem to lack understanding of the stress they cause through tests such as pushing a wheelchair user’s wheelchair further and further away to see how far they can walk. Empathetic, knowledgeable and medically trained staff could improve the experience. ‘Due to my bad experiences in the past I am worried about not working fast enough in a job.’ Jobcentre advisors should give a list of realistic options looking at what people can do, not what they cannot. In the ideal world, people imagine a specific service for disabled people that could help with CV writing, job applications and interview techniques. There should be one person who can provide focused, personal support and a service like Access to Work that provides pre-employment support.

Case study One young person worked at a shop standing behind a till all day, when her impairment deteriorated she asked for a chair but this was not allowed due to lack of space and no adjustments were made. Her impairment deteriorated further and she went off sick. Her contract was eventually terminated for being unfit to work and she received no redundancy pay. She then became house bound and depressed due to not working anymore. She did not get the information she needed to be able to work, such as access to work schemes.

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Many people have not heard of Access to Work. Some would like Access to Work to recognise flexible employment more, for example working from home or casual employment. ‘I wouldn’t even think of applying for some jobs in accountancy because I need so much time off work and they would need to offer much more flexibility.’ ‘I hate the phrase ‘unfit to work’. I don’t believe anyone is unfit to work if the work is flexible. There needs to be more adjustments.’ Some of the group with jobs stated how it took them a long time to find a suitable employer who would accept them, with one person attending 18 interviews until they got a job. They said it was their determination that got them through. ‘My employer has made adjustments to accommodate my hearing loss.’ ‘I am very lucky to have a supportive manager and colleagues so I can work from home when I need. I also managed to get a promotion!’ There are mixed opinions on disability employment quotas. Some people would appreciate the opportunities quotas would open up. Others want to be sure they win jobs on their own merit, though they acknowledged they could prove themselves afterwards. Some employers do not know how to cope with a disabled person. ‘Last year I worked at a supermarket. My branch and area manager told me I wasn’t fit to look after myself let alone the team I was going to manage. I suffer from seizures and clinical depression as my brain doesn’t create its own serotonin and I had a seizure whilst at work and my manager saw and asked me to leave.’ Most people with mental health conditions said they would not tell their work about their condition. They see a difference between the treatment of physical illnesses and mental illnesses. If someone is off work due to a physical condition, employers are

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generally more supportive. Employers are more wary and less supportive of mental health conditions. Mental health conditions are ongoing and fluctuate, much like long-term physical health conditions. ‘I have not told the people I work with, bearing in mind I work with mental health professionals, that my mental health condition is why I need a Wednesday morning off every few weeks. I don’t want to tell them because I am a nurse.’ Education is seen as a missed opportunity. Young children are the most open minded and susceptible to positive education on disability. Schools could utilise their Personal, Social and Health Education (PSHE) sessions to educate students on disability. Disability organisations could help deliver such sessions. When they should be raising aspirations, some schools dampened them: some people described how they were advised against taking further education because of their disability. The school to college transition was hard for many: they felt left behind, found it difficult to meet new people and make new friends. University can be a challenging experience too: universities can be unwilling to make adjustments for people whose impairments impact on their energy and concentration. Some said their university was not equipped to provide career advice to disabled students.

4. The need for more accessible sport and social groups Social activities and sports are really important to young disabled people. Most agree that the provision of groups and activities is getting better: there is more out there to get involved in. The Tabor Centre in Braintree is highly valued. People do not necessarily know what there is available and organisations like ecdp need to play a greater role in advertising and promoting opportunities. A central database of accessible clubs and groups in Essex would help. ‘We desperately need a database of clubs online.’

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Where there are gaps in provision, they seem to be in the opportunities for the over-19s. Many clubs have an age limit of 19; others have an age limit of 25. SNAP, for example, which has a sensory room and arts and crafts activities, has an age limit of 25 with no alternative provision for the over-25s. ‘I feel there are very little services geared up for young people within the system.’ Some people feel priced out of social activities: they cannot afford the membership fee and additional charges and have had to leave groups when they have increased prices. ‘It needs to be recognised that being disabled costs more money.’ Young disabled people want to be involved in social groups open to non-disabled people but can find it difficult to make friends: sometimes people talk to the PA more than the disabled person or will neglect to invite the disabled person out for a drink with the group afterwards. This is not seen as deliberate or malicious but rather a result of nervousness: the pub or bar might not be accessible and people are worried about causing offence. There are mixed views about having specific social groups for disabled people. Impairment-specific groups provide an opportunity for peer support and to share common experiences but can prevent integration with the wider community. ‘There needs to be opportunities to meet other disabled people and chat with people that understand us so we don’t have to explain ourselves.’ ‘Having separate ‘disabled people's groups’ would not be a good idea.’ Generally, people think there is a time and a place for both. Technology has made it much easier to find people to talk to about disability than it used to be. Online forums and social media groups are a great place to learn from other disabled people and form a community.

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‘There are many more support groups, forums and networks now, for example the Disabled Parents Network which is fantastic. You can go on the forum and ask questions and answer questions from real people experiencing the same thing as you.’ People are positive and hopeful about the potential of the internet. Matching sites (like online dating sites, but purely social) could be used to link people with shared hobbies and interests to form accessible groups and communities. Disabled young people would like their parents to get more support too. Sports groups are in demand. Some people already take part in sports such as boccia, swimming and yoga.

People report positive experiences of groups with instructors who fully understand how to adapt their sport classes for disabled people, for example wheelchair yoga. Sometimes basic access challenges get in the way, for example pool tables that are too high for wheelchair users to play on. A more common problem is the timing of sports activities: clubs for disabled people seem to meet in the day, which excludes those who work. ‘The only gentle exercise groups are in the day when I'm at work.’ People with mixed impairments face a particular challenge as they do not fit into typical categories.

Case Study A young person with cerebral palsy said she had a good experience at the gym for disabled people. The equipment was set up for disabled people with plenty of space.

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‘I really want to do sports, but because I don’t have a diagnosis it is very difficult to get into sport. I struggle with sports because I’m blind and a wheelchair user and I only use one arm and I feel I don’t fit into any category of any disabled team sports. I feel that the more impairments you have got the smaller the group you are in.’ There is an appetite for more mixed sports groups, for example dancing and yoga groups held in an open environment for non-disabled and disabled people. The biggest barrier to accessing sports for disabled people is the prohibitive cost of specialist and adapted sports equipment. Disabled people cannot try many sports without spending significant amounts of money. ‘I really want to get into wheelchair basketball but I haven’t got the money to afford a sports wheelchair, the equipment is too expensive.’ People would value the chance to try out different sports and pieces of equipment. An open day for multiple sports would be ideal. People report both good and bad experiences of gyms. Some are unable to cater for disabled people because staff are untrained.

5. Health and social care Experiences of health care services are extremely mixed. Most of the group members use health care services such as GP surgeries and hospitals. Some people are very positive about their GP/doctor’s surgery. They explain that their GPs or nurses are helpful, knowledgeable about sources of support and make them feel listened to and recognised. Walk-in surgeries are good too. ‘I have a long term pain problem and my doctor really advocated the link to my mental health, I think that’s so important, he is fantastic. He recognises the role physical health plays in mental health.’

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The Pain Management Team in Romford Hospital is widely praised: the nurses take the time to listen and allow PAs to attend appointments. Night nurses are approachable and interested. ‘We have much more choice about our care, this choice is critical and I feel that this principle of choice and control is here to stay; we have made a step forward.’ However, there is a perception that many services are designed by people who do not use services with no input from service users. Mental health services are particularly diverse in quality. Several people gave anecdotal evidence of people they know who were failed by their GP in Essex and by Essex mental health services, but when they went elsewhere, such as Stratford, they got the help they needed.

Disabled people often find it difficult to get a pre-booked appointment at the doctor’s. There is concern about GPs charging in the future. Waiting times are a particular problem for some young people with learning disabilities: they can become very anxious and their stress builds as they wait for what they find an intimidating experience. ‘There were lots of people in front of me in the doctors and I got really stressed out about the wait.’

Case Study A young person said his experience of health care services was mixed. His local GP in Essex was said to be brilliant and listened to his needs and had no problem changing his medication. But in one surgery whilst at University he needed advice from the University GP and a doctor shouted in his face, saying ‘don’t do that’ when asking about his mental health condition. He felt insulted.

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People would like more continuity in their care. Some describe how they have to explain their history and disability every time they attend a hospital or surgery, despite computer records. Doctors and nurses change frequently. ‘No one reads my history. Then you get referred to another service and you start again each time because no one reads your information.’

Standards of hospital care are variable. People complain that they have been ignored when wanting to use the bathroom or needing something, or that no one said ‘hello’, or that they had to fight to get information or to talk to someone. Some expressed that they did not find it easy to make a complaint. Health care professionals can use too much terminology and jargon in their explanations, which people with learning disabilities find difficult to understand. People report receiving too little or too much information: there needs to be a balance. People do not expect doctors to know all the answers, but their approach and style of communicating is key. Doctors could be more compassionate, talking about the positives as well as the negatives to make the whole experience less daunting. The quality of information about services for people with learning disabilities can be poor. A PA said they had been directed to services that were very far away and were two years out of date.

Case Study One person stated she had to battle to manage her health herself and eventually was able to do it. She felt that the nurses thought it was too dangerous and that she shouldn’t be allowed, even though they ran courses to help people become more independent. She suggested nurses need more training.

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‘Information is power. It needs to be presented in flexible layman's terms.’ A common frustration for disabled young people is that doctors talk to their parents or PA rather than them. They feel like they are not taken seriously. Sometimes doctors reveal an uncomfortable amount of information to relatives.

‘My doctors don’t say a word to me and I don’t feel like going back, they just talk to my parents.’ At the other end of the scale, some people explain that they cannot understand all the information given by doctors so need their parents present.

All agree that they key is having the choice.

Social care

People feel that having choice and control has improved the quality of their social care. Health care has not caught up with social care in this respect. The most serious problem people experience is when agency staff are unreliable or do not turn up. If someone cannot get out of bed or pick up the phone they are left helpless. Sometimes

Case Study One young woman described how the doctor would not tell her what her results were until her dad got there, even though she is over 18.

Case Study The GP asked a young person’s mum to go out of the room so they could discuss an operation with the young person. The young person didn’t understand everything and was scared with the overload of information given to her. She needed a choice whether she could have her mum in the room or not.

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agencies say someone will be around at any time between 9am and 12pm: this is a broad window. Private care is seen as more reliable. Getting the right social care is a challenge. To some people, having a social life is a vital part of their wellbeing; they feel like local authorities do not recognise the importance of social activities in social care. Most people want to live independently and would like more support with housing. Some people feel like they have to push to get attention and fight to get the information they need. ‘I am worried as I know there is supported housing but I’m not sure if it’s right for me. I would like to know there is support without going to sheltered housing.’ People have had good experiences and bad experiences of social workers. Again, they put the bad experiences down to a lack of training and education.

‘I am worried about when I haven’t got my parents anymore. I need help with my money and things like that.’ Care reviews and assessments are a source of stress. People do not want testing if their situation remains unchanged and they are happy with the service they receive. They do not want to repeat their life history and describe all their hobbies every time a review comes up.

Case Study One young person receives one day of support per month. She is getting older and she needs more help to learn about how to manage her money. She wants to socialise and to be more independent and needs support from a younger person away from her parents to do this. She cannot do this with one day of support a month.

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Figure 3 on page 26, showing results from the online survey, confirms the importance of the key themes discussed in the focus groups. According to the survey, young disabled people feel most strongly about seeing more young role models experiencing disability in the media limelight. This was followed by accessibility issues and service accessibility and training as key issues and problems for young people who experience disability.

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Figure 3: How the various themes we consulted on through the online survey comparing their importance to disabled young people.

Figure 3: 7 Point Likert Scale for all questions from online survey (1 = Strongly Disagree, 2 = Disagree, 3 = Slightly Disagree, 4 = Neither Agree nor Disagree, 5 =

Slightly Agree, 6 = Agree, 7 = Strongly Agree.

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What should happen now

Conclusions The people we met were lively and engaging. It is clear that they valued being listened to. Though many of the experiences in this report seem negative, the people that described them did so not in despair but with hope that things will change for the better. For many, this was their first opportunity to describe the challenges they have faced. Most of the time they are optimistic and want to talk positively: they do not want to moan so do not dwell on negatives. Even young people have seen change over the course of their lifetimes, and they are hopeful for more. Some problems could be addressed quickly and relatively easily, often by applying some common sense to regulation. Forgetting to drop the kerb next to a disabled parking space or leaving insufficient room for a wheelchair user to get into their car are avoidable and remediable mistakes. Other problems will take more time and effort to address. Attitudes and perceptions do not change overnight. Education needs to start earlier. Children need to grow up understanding that some people have impairments. These impairments can have some practical implications that you should be mindful of, but you should not treat the person any differently. Future Focus has captured valuable lived experience. The challenge now is applying the learning. We have set out a series of recommendations. Through taking part in the exercise, young disabled people were put in contact with one another. It was encouraging to see participants supporting one another with their own knowledge and experience. Some people had never experienced this type of peer support. We will build the legacy of Future Focus by facilitating more peer-to-peer contact. In the first instance, we will arrange an

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evening when all Future Focus participants who want to can meet up, enjoy refreshments and activities and plan how they will take ownership of an ongoing support and social group.

Recommendations to policy makers 1. Think practically about access. Take practical, common

sense advice, learning from disabled people themselves. This need not be expensive. The opinion of a wheelchair user can be more useful than regulation.

2. Improve advice and guidance for disabled jobseekers.

Disabled people need experienced and knowledgeable advisers looking at what they can do. Advisers need to understand different impairments and be knowledgeable on a variety of sectors. Crucially, advisors need to be able to think through which jobs could suit an individual and which jobs could be adapted to accommodate impairments.

3. Learn from the best health care professionals. There is

good practice out there in health and social care: it needs sharing so that all professionals are up to the same basic standard. Peer learning sessions and discussion seminars between professionals on good practice could be a way to achieve this at low cost.

4. Raise awareness of disability in schools. It all starts with

education. Start young and spread understanding and awareness of disability. PSHE lessons would be a logical home for disability education and are not being utilised. Consult disabled young people on what they would like their peers to understand.

5. Encourage more role models in the media. The Paralympics

were a brilliant example. We need to see examples of disabled people in other professions and walks of life. Representation should not be forced or tokenistic, but taking the bold move to cast a disabled person in an ‘ordinary’ role in a television programme can have a huge effect.

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At the core of many of these recommendations is listening to solid advice from people with lived experience of disability. There needs to be a mechanism for drawing on the voice of disabled people when their input would bring value to services and policy. For it to be meaningful, that voice needs to be representative. Carefully constructed focus groups are a useful means of consultation. Creating a bank of people with lived experience who are willing to share their opinions when called upon could also prove rewarding. Disabled People’s User Led Organisations are able to collect a variety of voices, synthesise them and articulate them in a practical manner.

Recommendations to ourselves and organisations like us 1. Help people access sporting and social activities. Simple

social activities make a huge impact on young peoples’ lives. Find out from young people where there are gaps. The aim should be to support young people to facilitate their own activities where gaps exist.

2. Share expertise with services, shops and businesses so that

they become more aware of disabled people, more understanding and more accessible. Disabled People’s Organisations should be ready to supply advice when businesses need it and help to generate the demand for it.

3. Showcase the successes and abilities of disabled people.

Promote positive role models.

Recommendations to participants 1. Have confidence in your abilities and do not be afraid to

take the lead. If your area lacks social groups, think about how you could organise one. Local Disabled People’s Organisations can support you.

2. Become a role model. You can be a role model in whatever

profession or career you go into. By demonstrating ability

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and leadership, you can change perceptions and attitudes towards disability.

3. Get involved in making changes in society. Your lived

experience has enormous value. Work with organisations that campaign for change, volunteer and share your opinions.

We shared our initial findings with our local Clinical Commissioning Group at an event that they organised to assess the equality and diversity of their service provision. We will share this report with:

• Other voluntary organisations, including Disabled People’s Organisations elsewhere in the region, disabled sports groups, the Council for Disabled Children, Time to Change and Scope

• Essex County Council planning and built environment teams

• Essex County Council education teams

• Clinical Commissioning Groups in Essex

• The Department for Work and Pensions

• The Department of Health

• The Department of Education We invite the following, in particular, to comment on the findings of this report:

• The Head Of Built Environment at Essex County Council

• The Department for Work and Pensions Disability Employment and Health Strategy team

• The Fulfilling Potential Team

• The Department of Education. Date of document: May 2014

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