60,000

Reasons for
a CIL in Dudley

This report is copyright to Dudley Centre for Inclusive Living and Linda Laurie Associates 2012

1. Introduction
Over the last 30 years, Disabled People all over the world from Dudley to Durban have begun to demand that we have choice and control in our daily lives. This research breaks new ground because Disabled People in Dudley have for the first time asked other local Disabled People about their experiences of living here. The findings of our survey and the recommendations in this report spell out in more detail than ever before why it is urgent for us to get a fully-funded CIL (Centre for Inclusive Living) here in Dudley - Britains second largest town. In the 1970s, Disabled People in the USA began to set up Centres for Independent Living (CILs). They provided services like the provision of advice and support for Disabled People wishing to employ their own staff to work in the ways and at the times Disabled People wanted them. This helped give Disabled People full control over how they lived their lives. Similar CILs have been set up in the UK and now the Government thinks that every town should have a CIL. The report Improving the Life Chances of Disabled People, of which this was a key recommendation, has been widely acknowledged as underpinning current government strategy regarding the development of Independent Living for Disabled People1. In its Strategy for People with Physical and Sensory Disabilities2, Dudley Metropolitan Borough Council (MBC) also recognises the importance of the Life Chances report. CILs all over the country are different from each other because they are set up by local Disabled People to meet local needs, but they are always controlled by and accountable to Disabled People themselves.
1

Improving the Life Chances of Disabled People (2006) Office for Disability Issues (link)
2

Strategy for People with Physical and Sensory Disabilities (2010-2013) (2011) Dudley Metropolitan Borough Council (link)

Dudley CIL is a grassroots organisation. The initiative to form a CIL in Dudley has come from the community and reflects a need amongst Disabled People living in Dudley to break down the isolation we face by coming together to remove the barriers to our equal participation in the borough. If, as we intend, Dudley CIL is to build its strength and grow as an accountable, user-led service provider and campaigner, we will need genuine, long-term commitment and support from the statutory, not-forprofit and private sectors. If the genuine voices of Disabled People are not to be drowned out or lost during the radical changes currently underway within public service provision, pro-active measures need to be taken by all key stakeholders to preserve, protect and promote Dudley CIL as the authentic local voice of the disabled community. The 2001 census3 found that there were at least 304,474 people living in Dudley. Indications are that this figure had increased to approximately 306,600 by 20094. As with other areas in Britain, Dudleys population is ageing. According to the 2001 census, 19.1% of the population in Dudley is living with a long-term health condition. This is higher than the national average of 18.2%. This is why we believe that there are at least 60,000 Disabled People living here. This means that there are 60,000 reasons why Dudley needs a CIL. In Dudley: 67% of the population provide between 1 and 19 hours unpaid help and support per week to family and friends 27% provide 50 or more hours unpaid help and support per week to family and friends 34,651 households (28%) include a Disabled Person5
3

2001 Census: Standard Area Statistics (England and Wales) (2001) Office for National Statistics (Link)
4

Dudley Borough Economic Assessment March 2011 (2011) Dudley Metropolitan Borough Council (Link)
5

Strategy for People with Physical and Sensory Disabilities (2010-2013) (2011) Dudley Metropolitan Borough Council (Link)

However, according to a response to a Freedom of Information request made by Dudley CIL in 2010, Dudley MBC only provides services to: 6,610 people with a physical impairment 811 people with learning difficulties 611 people with mental health difficulties In December 2009, we organised a conference on Independent Living because we believe that it is important for Dudley to have its own CIL. At this conference, a steering group was formed. We now have mentoring support from a sister CIL in Leicestershire. They are helping us to build up support for a CIL here in Dudley. We already have a constitution, a bank account, a website and a growing network of members. We have a small amount of funding and are actively seeking further funding from a range of sources, to carry out important work in the areas identified by this research. We receive administrative support from West Midlands Regional Disability Network and we are a group member of Dudley Local Involvement Network (LINk) and of Dudley Council for Voluntary Services. Dudley CIL promotes the active participation of Disabled people in all aspects of society. We plan to achieve this by: Securing the necessary facilities and support to ensure maximum choice for Disabled People Promoting the full inclusion of Disabled People in all aspects of society Campaigning locally for all Disabled People's human and civil rights Representing the views and aspirations of Disabled People in Dudley Implementing an action plan to achieve full civil rights for Disabled People Building a strong, active and informed membership Consulting, involving and engaging Dudley CIL members in all aspects of the organisation to create a sense of belonging and ownership Empowering Disabled People Encouraging young Disabled People's involvement in the organisation

Dudley CILs work is underpinned by the principles of the Social Model of Disability. This model has been developed by Disabled People and it views Disabled People as being restricted by the way society is set up, rather than by our bodies and minds. The Social Model says that we are disabled by a society that continually puts barriers in our way. It is important to remember that Disabled People are equal to non-disabled people. We are not special cases and we do not have special needs. We all have different needs, therefore some things must change before we have equality. This should be our right. Every opportunity should be provided to make sure that we are included, not just by changing physical access, but also by challenging attitudes, myths and stereotypes about Disabled People. When we talk about Disabled People, we include: people with physical impairments (whether or not you can see that someone has an impairment) people with sensory impairments (deaf and hearing impaired people as well as blind and partially sighted people) people with chronic illness or health issues including HIV and AIDS learning Disabled People including those with labels such as dyslexia, speech and language impairments people with emotional and behavioural differences people with impairments such as epilepsy, diabetes, Sickle Cell Anaemia children labelled as 'delicate' people who identify as 'disfigured' short people people who are in or who have survived the mental health system We aim to become a borough-wide, democratic organisation run and controlled by Disabled People. We want to be recognised as a body to be properly consulted at all times on issues affecting Disabled People.

2. The Research
Early on, we realised that it is important to work out what Disabled People in Dudley want from a CIL. We therefore asked the Big Lottery for money so that we could do some research to find this out. Another CIL the Southampton Centre for Independent Living has come up with 12 keys to Independent Living. These 12 keys (or basic rights) sum up the most important things needed by Disabled People if we are to live equal lives. They are: Full Access to our environment A fully accessible Transport system Technical aids and Equipment Accessible/Adapted Housing Personal Assistance Inclusive Education and Training An adequate Income Equal opportunities for Employment Appropriate and accessible Information Advocacy (towards Self-Advocacy) Peer counselling Appropriate and Accessible Health Care Provision

We drew up a questionnaire which asked Disabled People in Dudley what were the most important things they needed to live independently in Dudley. During the summer and autumn of 2011, we took these questionnaires to various meetings and groups throughout Dudley to try to get the views of a representative cross-section of the Disabled Community living in the Borough. We were pleased that we managed to get 72 people to fill in questionnaires between July and November 2012. After the results were collated, a further 11 were returned. These have been used to contribute to the qualitative data, but arrived too late to be included in the quantitative data, in this report.

We also asked for the views of a separate self-organised group of people with learning difficulties. We asked the same questions as the questionnaire, but to make sure that things were accessible, we asked for views in one big focus group and wrote down what people said on to flipchart paper (pictured).

The views we got back from this focus group and from all the questionnaires returned before the deadline, have been summarised in the next 12 sections of this report. Despite having a very small amount of funding to carry out this research, we believe that we have made an excellent start in producing a picture explaining the barriers to independent living that Disabled People in Dudley experience. It is crucial that these barriers are identified, so that we can begin our work to minimise or remove them. For the first time, Dudley CIL is able to provide up-to-date detailed evidence about the needs, aspirations and priorities of Disabled People in the borough. Completed questionnaires have been received from a range of people living throughout all of the Dudley townships with almost an equal number from both men and women. Figure 1: Proportional Diagram showing the numbers of male and female respondents.

Respondent ages range from under 18 to over 79, with roughly half being below the age of 55.
14 12 10 8 6 4 2 0

under 19-30 31-42 43-54 55-66 67-78 18

79+

Figure 2: Bar chart showing the age distribution of respondents 52 respondents (72.2%) identify as White British. 12 (16.7%) responses come from Asian Disabled People, but only 1 (1.4%) from the Black Community.

White British (52)

Asian (12)
No Answer (3) British Asian (2) European (1) Irish (1) Afro-Caribbean (1)

Figure 3: Pie chart showing the ethnic origin of respondents

We failed to reach some of those Disabled People in Dudley whose views are seldom heard and realise that it was ambitious to hope that the resources we had to conduct this research would be enough to get a complete picture of the views of the whole disabled community. We think that more research needs to take place to find out in detail what things all Disabled People in the Borough of Dudley feel are needed to improve access to independent living in the area. This further research we believe needs to focus in particular upon getting the views of Younger Disabled People and the views of Disabled People in Dudleys Black and Minority Ethnic Communities. Whilst some views from these under-represented voices are reflected in this report, we recognise that more work is necessary. We are surprised by some of the responses to our questions and summarise the most significant of these below. We also include some of the most striking and informative comments which sum up the general views of those who choose to give more detailed information about their lives. A majority of those who respond to the questionnaire choose to tick boxes and not to provide detailed feedback or reasons for their views. A significant minority of respondents do however share important experiences and, where appropriate these have been included in this report.

2.1.

Where I Live

Of the 60 respondents who express an opinion, 73.3% say that they are generally happy with the environment in the area in which they live, however 26.7% express varying degrees of dissatisfaction with their local area.

Happy (44) Unhappy (16) No Opinion Given (12)

Figure 4: Pie chart showing participants' happiness with their environment

It is hilly. There are no crossings and no local amenities

Don't go out

I don't go out very often as I need support/carer

No. Shopping - shelves too high. Path edges not level at some places for wheelchair Too many roads with cars parked on footpaths and lots of illegal parking which makes it hard to cross roads safely 9

2.2.

Using Public Transport

People were asked to report whether or not they can use different types of public transport - buses, trains, coaches, taxis and trams. Most respondents indicate that they can use buses (65.3%), whilst less than a third (29.2%) say that they can access trams. This may be due to the limited geographical area covered by tram routes in Dudley. In general, there are some striking differences in the accessibility of public transport identified by respondents, depending upon the township in which individuals live. A number of people state that bus passes, including those for carers, make travelling on public transport easier. A minority of respondents express strong dissatisfaction with the inaccessibility of buses.

I feel very strongly about not being able to use buses. Adverts lie when they say we can all use any form of transport because buses are completely inaccessible to me. The adverts are misleading because I simply cant use the bus

People involved in the focus group also say that they have experienced bullying and rude drivers whilst using public transport. Other barriers identified by people in this focus group include steps, doorways that are too narrow, heavy doors, signage that only uses words and the need for more lifts that give spoken information indicating floors, etc.

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Trams Taxis Coaches Trains Buses

Trams Taxis Coaches Trains Buses

Kingswinford Trams

Coseley/ Sedgeley/ Gornal Trams

Taxis
Coaches Trains Buses
0% 20% 40% 60% 80% 100%

Taxis
Coaches Trains Buses
0% 20% 40% 60% 80% 100%

Dudley/ Netherton Trams Taxis Coaches Key:

Halesowen

People who found the transport accessible People who found the transport inaccessible
0% 20% 40% 60% 80% 100%

Trains
Buses Stourbridge

No answer given

Figure 5: Bar charts showing the accessibility of transport in the townships in Dudley

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2.3. Equipment for Independent Living

72.2% of people said they did not have the equipment they needed to live independently in the community.

I need a walk-in shower. I also need light dimmers

I cannot afford specialist equipment to support my communication as this would cost in the region of 1200

Some people who attended the focus group reported that equipment is difficult to both find and obtain, and that this was made even more difficult due to a lack of funding.

Figure 6: Diagram showing the proportion of people without the equipment they need to live independently

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2.4.

My Community

People were asked whether they were happy with where they are currently living. The overwhelming majority of respondents say that they are happy with their living environment. This is surprising given the consistent findings of research carried out into Housing and Disabled People, which indicates an extremely high level of dissatisfaction expressed by Disabled People regarding accessibility and their housing. According to the 2007/08 Survey of English Housing6, one in five Disabled People requiring adaptations to their home believe that their housing is not suitable. The responses received to this question may be explained by the fact that the question asked does not specifically mention housing or accommodation.

Problems with horrendous traffic-not safe for wheelchairs. Some anti-social behaviour. Accommodation-adapted semi but would like a purpose built wheelchair accessible accommodation

Mostly. I have an alcoholic neighbour whose visitors from time to time can make living unbearable
Other responses indicate a lack of dropped kerbs and obstacles placed on pavements outside shops. The difficulty in obtaining repairs is highlighted by the focus group. People were also asked whether they experience bullying, abuse or teasing in the area where they live. 26.4% report that they are victims of this type of behaviour from other people.
6

Survey of Housing in England 2007-08 (2009) Department for Communities and Local Government (link)

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This includes a significant proportion (35.7%) of all Asian respondents, which demonstrates the combined impact of discrimination on the grounds of both race and impairment experienced by Disabled People from Black and Minority Ethnic communities.

No (51) Don't know (2) Yes - Asian (5) Yes - White British (14)

Figure 7: Pie chart showing the ethnic origin of respondents Members of the focus group also said that bullying was an issue for them within their communities.

Bullied by able-bodied shoppers. Swore at by other road users One of jobs not good, pick on me at work People saying snide comments. Also people being ignorant and not wanting to learn about my disability I cannot go to the park on my own because people swear at me
14 respondents (almost 20%) tick a box on the questionnaire to indicate that they want to receive advice and support to help them deal with this bullying. This is a significant number of respondents and demonstrates the need for a CIL in Dudley which can provide such support to victims of disability hate crime.

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2.5. Personal Assistance for Independent Living

Most respondents say that they do not need anybody to provide personal assistance, however a significant minority state that they don't get the support they need. Those questionnaire respondents who indicate that they do have enough personal support (80.6%) include those people who have paid and unpaid assistance. 26.9% of Dudley residents provide 50 or more hours of unpaid support per week7 and, based on national8 and local9 evidence, it is estimated that approximately 60% of these are women. 13.9% of questionnaire respondents say that they do not have the human support they need to live independently and go out when they want to.

I would like help with anything I cant do, or struggle to do unaided. For example, I would like help with shopping, decorating, ironing and preparing food Without a PA/ carer, I am unable to go out and my budget is being cut I need more support to live a fully inclusive life like other people
7

2001 Census: Standard Area Statistics (England and Wales) (2001) Office for National Statistics (Link)
8

Survey of Carers in Households 2009/10 (2010) NHS Health and Social Care Information Centre (Link)
9

Dudley Citizens Panel Quarterly Survey (2004) Dudley Metropolitan Borough Council (Link)

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Funding is not targeted correctly at people who need support. Criteria are too rigid and dont reflect or meet individual need PAs are very much required by me in particular and in general. I need access to PAs to support me with leisure activities My son is 5 years old and is registered disabled. We would have appreciated help with appropriate childcare to enable us to more easily earn a living. We never found any
Nine respondents state that they need help with shopping. This support is usually not available for people who are not recognised as having personal care needs and people who are often on low incomes are often advised by local authorities to shop on-line. This ignores the issue of extra delivery costs and the fact that many people, particularly those that are also elderly, do not have access to a computer. The focus group members speak about their difficulties whilst receiving personal assistance, which include: a lack of control and respect for their choice the people providing their assistance taking over a lack of training for Disabled People who employ personal assistants a lack of funding the length of time it takes to arrange funding for personal assistance a lack of information about who can apply for personal assistant jobs

When people manage to overcome all of these barriers, the experience of employing personal assistants is often a positive one:

I am retired. I do a lot of voluntary work. I have got two staff. I am lucky I have two very good people working for me. I employ them myself through Direct Payments 16

2.6.

Education and Training

36 people (50%) are involved in some kind of study. 26 people study at a learning centre and 19 study at home.

Figure 8: Venn diagram showing the distribution of learning by questionnaire respondents

The majority of people who are learning at an institution are positive about the support they receive from their tutors or trainers. The enjoyment and rewards that people are obviously experiencing from undertaking education are very apparent from the responses received at the focus group session.

Love going to college Meeting new people

Like studying

Made new friends Staff helpful

Inaccessible information is a big barrier to self-study 17

Lack of support to use my learning materials and to write for me

2.7.

Enough Money

12% of those who answer the question about whether they have enough money to meet their essential needs say that they do not.

Figure 9: Pie chart showing percentage of respondents who do not have enough money Concerns that people have regarding their income include meeting rising heating costs and the increasing costs associated with car usage often the only means of getting out and about for people unable to access public transport.

I can't always afford to go out due to fuel costs for my car.

A personal budget to enable me to go out to places in my Motability vehicle whenever and wherever I want/ need to go.

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2.8.

Support to do a Job

Unemployment amongst Disabled People is still 51% (compared to 22.5% amongst the general population10). Respondents to this survey are knowledgeable about the benefits of employment. The members of the focus group say that the positive things about working include:

Working together Mixture of people Freedom

Learning Getting paid Self-respect

The barriers to employment identified by respondents in this research include a loss of benefits when taking up employment; rubbish jobs and no pay; not being treated with respect; using and not paying learning disabled people for their hard work and commitment. Of the 41 respondents who express an opinion, 11 (21.6%) do not have the support required to do a job they enjoy. Figure 10: Diagram representing the number of respondents with (green) and without (red) support

I would need support and equipment to enable me to do a job. I have a job I enjoy, but find it difficult as I am a volunteer and have no funding to support me
10

Labour Force Survey 2nd Quarter 2011 (2011) Office for National Statistics (Link)

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2.9.

Information I can Understand

Overwhelmingly, people appear to be satisfied with information that they receive or they have someone who helps them access it, but other comments included:

Some suppliers of information have not got it in a format I can read it or will not supply it like this. They say get someone else to read it to you. I am not sure who they mean

It never explains what I want to be explained. If I want information about getting from A to B, I will be given information about mobility training instead. This is putting the blame on me and saying I cant do it because of my impairment rather than because of the lack of information or [because of] barriers in the environment. If you ask for large print, you either get A4 blown up to A3 or 16 point with no other sizes. There is no customised large print, for example with proper line spacing or 24 point available. This is a lack of knowledge on the part of the provider. If it isnt a lack of knowledge, it must be unwillingness to do it. I am supposed to be grateful for whatever they can give me

Information could be improved by putting information into suitable formats, such as large print, audio, British Sign Language, Easy Read, etc.

Explanation [should be] simple with no jargon. Be given/ directed to support groups/agencies. More information re medications

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2.10. Help to Speak Up for Myself

Almost a third of respondents say they need to talk to someone to get help with a problem they are facing.

Professionals who carry out assessments have a complete lack of understanding as to why we need what we need and there is no brokerage or advocacy service in the borough to provide Disabled People with support in these assessments.

The focus group members identify that there are Not enough welltrained advocates and one of the problems they experience with advocacy is People speaking for you without your permission.

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2.11. Getting Support and Advice from other Disabled People

Over a fifth of the people who answer the question about peer support from other Disabled People state that they do not get enough support. Such a high level of demand for what in many other areas constitutes a core CIL service is one important example evidenced by this research of the need for a well-funded self-organised Centre for Inclusive Living in Dudley.

Put me in touch with an organisation that can provide peer support, please

I would like someone to talk to me about this. In my view, this is definitely needed around here

I do not have fellow disabled people of my age range to talk to about young people's issues

I have no access to peer support. The main difficulty is that there is nobody to ask for such support. You would need a CIL to fill the gap

No peer support because Disabled People in Dudley are unconnected and need support to support each other

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2.12. Keeping Well

Of those who respond to questions about healthcare: 16% say that they are unhappy with the way nurses speak to them when they attend hospital appointments The same percentage of respondents are unhappy with the way doctors speak to them 9% are unhappy with the treatment they receive from nurses This figure rises to 13% when respondents are asked whether they are happy with the treatment they receive from doctors
70 60 50 40

Happy
30 20 10 0

Unhappy

Communication Treatment by Communication Treatment by with nurses nurses with doctors doctors

Figure 11: Bar chart showing respondents experiences with healthcare professionals

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Rudeness, abruptness and a lack of understanding of disability are highlighted by a number of participants as issues they face when dealing with medical staff.

Because I am hard of hearing, they should have a report put on my records to let them know and then they could look and speak directly to me

I have had mixed experiences. An improvement would be for nurses to know how to communicate with me in a civil manner which treats me as an adult. Very, very often, they use jargon, which is a barrier to communication. The opposite can happen, where they give me no information whatsoever. Then, I have to try and work out what I havent been told

I do not like the way the nurse talks to me. It is very abrupt

I believe if patients can be treated with value mental health services would drastically improve and so would the rate of recovery

Health workers talk to my mum, not me

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Participants are also asked about their experiences of being dealt with by doctors. Insufficient time with doctors during appointments is highlighted by participants as an obstacle to their successful communication with medical professionals.

I cant generally follow what they are saying to me. They can be highly patronising. This is again a situation of being talked to like a child

The focus group discussed some of the things that help them when they need to access healthcare. Their comments include the fact that they prefer to receive treatment from doctors of the same gender This group also say that barriers to healthcare that they had experienced include:

Doctor talks to the support worker not the patient

Info not easy-read

Doctors receptionists not understanding

Screening not explained

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3. Conclusion
The action research in this report has been conducted by an embryonic, user-led Centre for Inclusive Living. It lays the basis for more in-depth research to be conducted by Disabled People and provides important insights into the institutionalised barriers faced by Disabled People across Dudley. The issues highlighted in this report will help Dudley CIL and its partners to better focus their activities, developing services which will address the genuine needs and priorities voiced by Disabled People. The gaps in knowledge evident from the findings of this research also highlight the urgent necessity for further action research to be conducted amongst young Disabled People and Disabled People living in Dudleys least heard communities. A priority for Dudley CIL arising from this research will be to take action which challenges prejudice and discrimination, both at an individual and at an institutional level. The urgent need for investment to develop effective local peer support, self and peer advocacy is clearly confirmed by the findings of this research. The isolation, intimidation, victimisation, bullying and harassment of disabled individuals are endemic throughout much of the borough. A clear theme to emerge from this research is the lack of support experienced by many disabled individuals who are demanding peer support in order to challenge this discrimination. 11 people (15.3%) of respondents in this research tick a box to indicate that they want to speak to someone about being sad. 21 (29.2%) people want to know more about Dudley CIL and 24 (33.3%) want to know more about future events. At an institutional level, the apparent lack of understanding and empathy concerning disability issues evident from, for example, responses concerning the attitudes of health professionals, highlights the need for Disability Equality Training across the public sector in Dudley. According to a response from Dudley Metropolitan Borough Council to a Freedom of Information request, Dudley MBCs budget for social care was 86.403m in 2009/10. For the year 2011/12, despite the ageing population it will have shrunk by 7m to 79,018m.

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At a time of substantial cuts in public services, it is vital that the human rights of Disabled People are protected. This can only be achieved if those responsible for front line services to the disabled community are conscious of the likely impact of such changes upon the lives of Disabled People. It is hoped that this action research makes an important contribution towards furthering the understanding of how discrimination against Disabled People works in Dudley. We hope that this important groundbreaking report, compiled by and for the Disabled Community in Dudley, helps to evidence the growing and urgent need for long-term investment to sustain the authentic voices of our community through ensuring that our CIL receives the support it needs to thrive and flourish.

This report is copyright to Dudley Centre for Inclusive Living and Linda Laurie Associates 2012

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