Dependence

to

Wellbeing

A Report on the Activities of the Rehabilitation Project Group

Presented by

Tom Pey and Gary Dooley

to

Vision 20:20 Conference 29th June 2006

Introduction – Policy context

Social Policy Goals

Bert Massie, Chair of the Disability Rights Commission gave the 4th Annual Disability Lecture at St John’s College, Cambridge University last month. He said that the concept of equality as treating everyone the same will fail to deliver disabled people’s needs. He went on to say:

  • “Disability rights demand that people are treated differently in order to achieve equal results;
  • Uncomfortable and ethically wrong though this might seem, people are valued more for the part they are seen or considered to play in society than for the rights they theoretically possess.
  • It is clear to me that it is only through concerted action to transform the roles disabled people play, their status and the nature of their interaction with others in society, will we reach a point where all disabled people are accorded the same lived experience of rights as others.
  • Making full use of legal rights and duties is of course instrumental to this goal, but the true engine of change will come from disabled people’s active participation at all levels of society.
  • Public policy for much of the last century has favoured maintaining many disabled people in a state of suspended animation.
  • much greater investment (is needed) in social care, coupled with reforms which place greater control in the hands of the user, ensure delivery is guided by the principles of upholding dignity and respect and which generate a system which provides the best value for money.”

Some facts which highlight the impact of inadequate social care policies

  • Disabled people account for 40% of those out of work in Britain;75% of visually impaired people are unemployed. This is higher than any other category of disability except learning disabilities.
  • 35% of those without any formal qualification are disabled. Evidence suggests that visually impaired people are better educated than the general population with over 65% possessing some form of qualification.
  • ¼ of all children living in poverty have at least one parent who is disabled.

Political context: putting social care into a civil rights perspective

  • Labour Party Manifesto 1997 pledged to deliver “comprehensive and enforceable civil rights” for disabled people. This pledge was reinforced in the 2001 and 2005 Manifestos;
  • Disability Discrimination Acts 1995 and 2005 set out to tackle discrimination in key sectors: employment, education; housing, access to goods and services and transport;
  • The Human Rights Act 1998 (HRA), which incorporates the rights contained in the European Convention of Human Rights into UK law, is also relevant in challenging discrimination. However, unlike UK equality legislation, the HRA can only be enforced directly against public bodies, such as a local authority and private bodies exercising public functions.

Progress and gaps: transport

  • Taking the example of transport, the Disability Discrimination Acts have delivered – and continue to deliver – significant improvements in the design and availability of accessible public transport. However, the whole thrust of the legislation is about the “hardware”: achieving greater numbers of buses with wheelchair access or raising the percentage of pedestrian crossings with tactile surfaces and audible signals. What is missing is an assessment or evaluation of what difference these developments are making to the daily lives of disabled people. In short, the government continue to spend large amounts of money on making transport, the built environment and access to goods and services accessible to blind and partially sighted people while they continue to reduce their investment in making visually impaired people accessible to the environment. Social care spending is under pressure and existing rehabilitation services are woefully inadequate.
  • This is the gap that needs to be plugged by a coherent social care policy which, rather than providing solely for disabled people to remain comfortable in their own homes, takes a broader approach to enabling people to lead the lives they want to live.
  • To give one practical example, many disabled people have never been public transport users, because it was simply not an option. Now that more and more buses and trains do include the facilities that people need, there is no coherent process of delivering information to let people know what is available or of arranging ways in which they can become more familiar with and confident in using public transport.
  • At an even more fundamental level, accessible public transport is of no benefit at all if people do not have the means – either physically or in terms of confidence – to get to it from their homes. This is where social care policy has a vital role to play.

The Rehabilitation Project Group (RPG)

  • RPG established in London in August 2005;
  • Membership includes voluntary and statutory sectors, Government Departments and devolved administrations, service users, commissioners and providers;
  • Structure of sub-groups – adults, children & young people and education & training;
  • Active now in all countries of UK.

Activity to date

  • Completion of reports on state of services in each country by sub-group topics;
  • Informal research on role of RW;
  • Consideration on outcome-based services and need for holistic assessment.

Campaign successes

  • Widespread sector support – major charities, and 25 local societies are fully supportive of Re-think Rehab and actively champion our work;
  • Widespread user support – c. 500 champions across UK, guide dog owners included;
  • Widespread political support in England, Northern Ireland and Scotland – over 1/3 MPs and MSPs backed motion urging Government/Executive action.
  • Political action:
  • Debate at oral health questions led by David Amess MP (Cons, member of All Party Parliamentary Group for Eye Health and Visual Impairment and Health Select Committee) and John Baron MP (Conservative Shadow Minister for Health).
  • Written parliamentary questions laid down in the Commons (10) and in the Scottish Parliament (5), keeping issues on table.
  • Network building at Scottish Party Conferences (Labour and SNP), consolidating our support with key MSPs.
  • Dialogue between leader of Plaid Cymru (Ieuen Wyn Jones AM) and Welsh Assembly Minister for Health and Social Care (Brian Gibbons AM – Lab) on our behalf.
  • Around 43% MPs, 20% MSPs and 15% AMs have been directly lobbied by local constituents – a total of 261 politicians across the UK. Actual figures are likely to be higher as many constituents may not have told us that they took action.
  • Full support from DHSSPS and Scottish Executive for our work.

Campaign work still to do

  • We are currently developing the strategy and work-plan for phase two. The Ultimate aim is to generate a receptive environment for receiving recommendations of our report. Key issues:
  • Raising pressure at local government level and initiating debate. We will be writing to all Directors of Adult Social Services in early October to flag up the imminent results of our needs research and RPG report, which will be sent out as soon as possible after the September RPG meeting.
  • Communicating with Rehab Workers and kick-starting debate over the future of their profession and rehab services. The September RPG report will be a vehicle to do this.
  • Ensure that the Scottish Executive Eye Care Review in Scotland fully considers and incorporates recommendations from Scottish RPG group.
  • Getting DH on board – we must step up pressure to get their active support.

Adult Needs Research

  • Adult research exercise nearing completion;
  • Data received and analysis underway;
  • Many opportunities for further study;
  • Exercise for children and young people getting underway during July with a likely completion date – by the end of this year;

Currently, we have surveyed over 1200 people of all ages from 18 to 99 years from all over the UK and will have over 1600 by the time data collection is complete.

Every person completed a very detailed questionnaire of over 300 questions about all aspects of their lives including education, employment, mobility, technology, health and social activities.

A preliminary analysis of the data from the first 1155 people has thrown up some fascinating insights into the lives of blind and partially sighted people in the UK

A few of the key statistics include the findings that

  • Almost 2/3 of the people surveyed found it difficult or impossible to cope with the demands of their everyday lives
  • 43% of people feel cut off from their surroundings – interestingly, this was more marked for younger people with over half the people of working age feeling cutoff from their surroundings.
  • 30% of people believe that their vision will makes it likely that they will injure themselves when moving around in their normal environment.

We asked people about organising assistance and where they would go to address their needs:

  • A third of people found it difficult or impossible to organise the assistance they needed.
  • 28% of people didn’t think they had anywhere to go to express their needs and of those who felt that they had a forum a substantial number didn’t think their needs would be addressed even when they had expressed them.

There was a lot of confusion about where to go for information on different issues including mobility aids, benefits and advice on sight problems.

Many people expressed the view that they were sure that there was a lot more available than they had access to, but they didn’t know where to go to find out about it.

We asked people to rate a large number of activities and found that the most difficult included

  • Shopping
  • Dealing with mail
  • Setting controls on appliances

With over half the people surveyed having trouble with each of those activities.

The most difficult activity was judged to be identifying food and medication labels which 79% of those surveyed found difficult or impossible.

We asked questions about mobility and mobility training:

  • Only 37% of people surveyed had accessed some form of mobility or orientation training
  • One third of those people who have had mobility training are still only able to use between 1 and 3 routes

In all areas of mobility, both personal mobility and use of public transport, we found severe limitations in use and a real expressed desire for greater access. Individuals confidence was a major factor inhibiting use of public transport and moving around externally.

One feature of our survey was a large number of open-ended questions, giving people the opportunity to freely express their views on different issues in a way that is less prescriptive than in many standard survey instruments

For example:

We asked people what they thought was the single most important thing that could be done to improve things for blind and partially sighted people in the UK

One theme that emerges very strongly from peoples responses centred around the need for greater awareness from the general public.

Comments included:

“Increase general public and professional awareness!”

“Increase awareness of blind people and their needs”

“I need increased awareness and to be treated with respect”

And this is just a small sample of the dozens of comments received on this issue.

Other themes to emerge were the need for more help in both employment and education forums

This study has generated a huge amount of fascinating data and this is just a brief taster of the kind of findings that are emerging. What the final analysis and resultant report will provide is an understanding of the outcomes that blind and partially sighted people would require form a package of social care that meets their needs.

An outcomes-based service to blind and partially sighted people

  • “We propose clear outcomes for social care derived from what people tell us they want. The outcomes will be used to test and challenge how far social care is moving towards delivering the vision”.(DH 2005);
  • Social Policy Research Unit (SPRU) at York University;
  • SCIE – Outcome-focussed services for older people – reporting soon;
  • JRF;
  • Scottish Executive – Changing Lives;

Outcomes – a right, not a luxury

  • As above – now firmly a part of Government thinking around the UK.

A sample of outcomes

Health – emotional wellbeing

-Have the means of making and attending appointments with a variety of healthcare professionals

-able to travel to local hospital and utilise facilities such as the help-desk where appropriate

-able to perform simple healthcare tasks such as taking temperature, blood pressure or blood-sugar levels if necessary

-able to use appropriate equipment

-able to have and operate an appropriate means of emergency contact e.g. speed dial etc

-able to access, receive and record information, correspondence etc.

-organise and administer own medication

-able to access and benefit from emotional support from peers

-able to provide solutions though systems of self-help

-able to navigate indoor environment of hospitals and negotiate use of facilities such as enquiry desk.

Transport

-have access to all routes and forms of transport essential to wellbeing

-have knowledge of services and rights – sufficient information to make choices

-able to access fully the most frequently used transport routes and types

-know local bus stops, able to identify correct bus, alight at correct stop, seek help, know where to sit etc.

-rail, tube, trams – same as for bus travel

-community transport – able to access when needed and available

-taxi and private hire – as above

-able to make bookings correctly and give instructions

-have access to transport information and know how to utilise.

Work

-able to use essential routes to and from work, during work – internal and external

-able to navigate and negotiate internal work place

-trained in safety practices, issues and policies

-able to be a team member (self advocacy)

Leisure and spiritual pursuits

-Know of opportunities for leisure and spiritual pursuits

-Know and be able to use routes to relevant locations for activities

-Able to explain requirements to staff

-Feel comfortable with peers and within environments e.g. self advocacy

-Have opportunities to meet others and the ability to do so.

Enjoyment and safety of the home

-Able to dress and wash yourself

-Able to make balanced and nutritious meals

-Able to organise yourself and your own home for your own comfort and safety and that of others living there

-Able to prepare yourself for bed

-Able to use kitchen equipment

-Trained in the use of equipment

-Able to exercise personal hygiene

-Able to clean own home

-Able to participate in gardening

-Able to undertake simple maintenance

-Able to be responsible for the safety of other household members

-Able to interact with others

-Have access to training for family members, carers, friends and others

Education

-Know and be able to safely travel routes to and from place of education, and associated areas

-Have access to information sources such as libraries etc.

-Have access to information – specificly relating to choice of courses of study and their availability

-Have access to curriculum

-Trained in use of adaptive and assistive equipment

-Be able to self advocate

-Know and understand the process for sitting exams.

Life skills

-Know how to get out and about safely and with the minimum of stress outdoors

-Know how to get safely and with minimum of stress indoors

-Know how to use a telephone to access information

-Know how to use computer including accessing the internet – access to useful sites including local authority services

-Be able to self advocate

-Be able to dine out in line with personal aspirations

-Be able to make effective use of communication systems – audio, writing, tactile

-Able to use communication systems for object identification – e.g. Braille or other forms of tactile labelling

-Able to access information – local and national news and information

Information

-Have access to and be able to use the Internet

-Have access to and be able to use useful sites e.g. local groups, Local Authority, police etc.

Streets

-Able to use streets effectively and with the minimum amount of stress and maximum safety

-Understand the principles of how streets work

-Able to navigate effectively in all settings as appropriate e.g. in traffic

-Understand and be able to use tactile paving and other accessibility features of the built environment (crossings etc.).

The role of the RW - jobs done, utilisation of RWs, the involvement of other professionals and the effect of education and training

  • RW research findings – Assessment of need, training in mobility, low vision, communication and personal care;
  • Time spent – 40% on assessment and 35% on administration;
  • Working with clients with multiple and complex needs;
  • Unable to meet some service users needs – IT, more complex low vision.

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The debate to be had – specialist mobility officer or post-graduate level worker similar to Occupational Therapists.

  • The introduction of “Wellbeing Centres” – opportunity for intensive period of training and support;
  • Possible role for Rehab Assistants – training based on new National Occupational Standards and at NVQ 3 or 4;
  • Possible new models of worker based on “bottom slicing” and “top slicing”;
  • Implications for training;
  • Need to address growing systemic shortage of workers coupled with lead time to develop new training and course duration – could lead to one-year course at Masters level for graduate entry.

The question to be answered

Given that there is a shortage of fully qualified rehabilitation workers:

  • to what extent should we mainstream parts of the present rehabilitation service, allowing the more qualified rehabilitation worker to address the remaining needs of blind and partially sighted people? Mainstreaming might include passing parts of the service over to other suitably qualified social care workers; creating a position of Rehabilitation Assistant who might or might not be a part of the sensory team; upgrading the skills of Occupational therapists etc. There are many more options that could be ruled in or out and we would welcome feedback on these, if possible.

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