Нічого про нас без нас

Ничего о нас без нас

ոչինչ մեր մասին առանց մեզNothing about us without us

Neil Crowther, October 2013

Presentation delivered on behalf of the British Council for the European Commission IDEAS project on inclusive local decision-making in Armenia, Azerbaijan, Georgia, Jordan, Lebanon and Ukraine.

Nothing about us without us Disability is a situation, caused by social conditions,

which requires for its elimination the following:

› That disabled people should, with the advice and help of others, assume control over their own lives.

› That professionals, experts and others who seek to help must be committed to promoting such control by disabled people.

› Union of the Physically Impaired Against Segregation, 1975

Participation is the means and the ends

“As disabled persons have equal rights, they also have equal obligations. It is their duty to take part in the building of society” – UN World Programme of Action on Disability 1981

Participation is about gaining power and ‘being in the world’

It is about transforming attitudes and expectations It is about equal citizenship

UNCRPD Recognizing the valued existing and potential

contributions made by persons with disabilities…which will will result in their enhanced sense of belonging and in significant advances in the human, social and economic development of society…

Recognizing the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices

UNCRPD Considering that persons with disabilities should have

the opportunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them

In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations (Article 4 (3))

Civil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process. (Article 33.3)

From ‘passive recipients’ to ‘co-producers’

Consultation, involvement and ‘co-production’

Consultation – what do you think about these proposals?

Involvement – can you help us to work out what to do and help us to do it?

Co-production – what are we going to do and how can we do it together as partners?

Different levels of involvement & co-production

In national and local elected office and governance In regulation In designing public policy, developing practice,

monitoring & evaluating success As Employees within organisations Disabled people’s user led organisations Self advocacy and peer support Disabled people as ‘authors of their own lives’ –

supported decision making, direct payments, personal budgets, employers

Timeline of UK law related to disability equality and human rights

Disability Discrimination Act (DDA) 1995 – prohibits discrimination in employment & goods and services

Human Rights Act 1998 – incorporates European Convention on Human Rights into UK law

Disability Rights Commission Act 1999 – established Disability Rights Commission

Special Educational Needs and Disability Act 2002 – extends DDA to cover schools, colleges and universities

October 2004 – duty to make reasonable adjustments to physical access comes into force

Timeline of UK law related to disability equality and human rights

Disability Discrimination Act 2005 – extends DDA to transport, public functions & introduces new duty on public authorities to promote equality of opportunity

Equality Act 2006 – dissolves DRC & establishes Equality and Human Rights Commission with a statutory Disability Committee

Equality Act 2010 – replaced DDA while maintaining its features and also covers non-discrimination & equality in relation to age, gender, race, sexual orientation, religion & belief, marital status and pregnancy

2010 Act introduced new provision prohibiting use of ‘pre employment health questionnaires’ in recruitment

Involvement and the law Disability Equality Duty – duty to promote disabled people’s

participation in public life & duty to involve disabled people

in preparation of disability equality schemes

Replaced by the Public Sector Equality Duty - duty to

‘encourage persons who share a relevant protected

characteristic to participate in public life or in any other

activity in which participation by such persons is

disproportionately low’ but lost explicit ‘duty to involve’

Equality and Human Rights Commission – Britain’s

‘independent mechanism’ under UNCRPD – legally required

to have at least 1 Commissioner who is or had been a

disabled person and to have a statutory Disability Committee

until 2013.

Care Bill

The general duty of a local authority, in exercising a function under this Part in the case of an individual, is to promote that individual’s well-being.

(2)“Well-being”, in relation to an individual, means that individual’s well-being so far as relating to any of the following—

(c)control by the individual over day-to-day life (including over care and support, or support, provided to the individual and the way in which it is provided);

Examples of involvement and co-production in the UK

In national policy and regulation In local policy and implementation In elected office

Examples of involvement at the national level

Equality 2025 – official advisory body to Ministers Disabled Persons Transport Advisory Committee –

advises government on transport policy Disability Rights Commission & Equality and Human

Rights Commission Disability Committee – ‘independent mechanism’

Care Quality Commission – experts by experience regulating health and social care

Ofcom advisory committee on older and disabled people – promoting accessible telecommunications

Examples of involvement at the national level

Independent Living Strategy & scrutiny group– co-production

Independent Living in Scotland Disability Action Alliance Government consultation on ‘better working with

disabled people’

Examples of involvement & ‘co-production’ at the local level

Making Stonehenge accessible

Wiltshire & Swindon Users Network worked with English Heritage to review why so few disabled people visited the the world-famous ‘Stonehenge’ site

Access audit, consultation with local disabled people, information audit

Worked with the architects for the new visitor centre – designed was revised

Local access groups work with local planning authorities, public bodies and businesses to improve accessibility

Homes for life

Hull City Council established Hull Access Improvement Group (HAIG) a practitioners’ group of disabled people who were trained in reading planning documents and able to provide training to other disabled people. Following the revised planning guidance, the regeneration partnership undertook extensive public consultation (including with HAIG).

They then agreed to a significant change in policy: to incorporate ‘Lifetime homes’ (inclusive design) standards into the planning requirements for the redevelopment.

Accessible healthcare Islington Primary Care Trust set up a disability group

with staff providing adult and children’s services as well as with representatives from Islington Disability Network, Islington Age Concern and Islington Borough Users Group (mental health).

The Group worked together to identify the priorities for disabled people. These included providing and disseminating information in alternative formats such as “easy read”, and advice to all GPs, dentists, pharmacists and opticians in Islington about improving their services for disabled people, including about using British Sign Language (BSL) Services.

Disabled people’s user led organisations

The government established a £3M ‘Facilitation Fund’ that finances individual DPULOs to undertake projects that will build the sustainability of their organization.

Over 130 DPULOs have been funded to date. DPULO’s involved in wide range of activity including

employment support, tackling hate crime, social care

The right to control in Essex

Essex Coalition of Disabled People works with local authorities and the Department for Work and Pensions to support disabled people to ‘take control’ of their support.

Disabled people have a right to: Continue with the same support services as at present if

happy with the service Let a public body (for example, Essex County Council

or Jobcentre arrange support services required Enable a person to buy their own support using money

given to you by a public body Have a mix of these

Disability hate crime

Greenwich Association of Disabled People is recognised by the Metropolitan Police as a ‘a third party disability hate crime reporting centre’ which means that disabled people can report incidents and seek support from them and that the incidents are officially recorded without the person having to go to the police

Disability Jury promotes accessible transport

Transport for London Disability Jury – 14 disabled jurors appointed who held several sessions with senior management of Transport for London on barriers to travelling

Put together three year action plan for TFL

Investing in tomorrow’s leaders

Disability Rights UK's Leadership Programme provides disabled people with the skills and confidence to improve their lives and make a difference to the lives of many other disabled people across every sector of society. Each year the Leadership Programme provides training for disabled people in leadership skills such as public speaking, confidence building and networking for success

Involvement in national and local elected office

Man with Down's syndrome achieves ambition to be elected as parish councillor

Access to elected office strategy

A £2.6 million access to elected office fund to help candidates with the disability-related costs of standing for election e,g, difficulties using public transport, paying for sign language interpreters, paying extra travel or accommodation costs if a support worker is needed

An introductory online training course which gives an overview of the skills needed when standing for office. .

Access to elected office strategy

Paid internships gives people from diverse backgrounds the opportunity to get a taste of working in politics.

Online guidance for political parties on the legal requirements to provide reasonable adjustments.

Making the case for involvement & co-production

Harnessing the voice of disabled people locally has both quantitative and qualitative benefits

Data from Department of Health on LINks (HealthWatch from 2013), which empower people in the community to have their say or influence local health and social care services, suggests savings of £4.10 for every £1 invested in LINks

Studies on community development which harness local community’s social capital suggest this approach can save between £3 to £3.80 for every £1 invested

Making the case for involvement & co-production

The user-led mental health Personalisation Forum

Group is estimated to save some £250,000 per year

through using users’ social capital rather than only

statutory services

Demos reported that coproduction between DPULOs

and local authorities helped to mitigate or minimize

effects of difficult decisions regarding budget

changes and/or de-commissioning

Beyond social care, there is a higher incidence of

reporting of disability hate crime where independent

support services through DPULOs exist

‘Disabled people are the best problem solvers’ - Baroness Jane Campbell

‘Nothing about us without us’

Resources

Examples of involvement http://www.equalityhumanrights.com/advice-and-guidance/public-sector-equality-duty/case-studies/case-studies-consultation-involvement/

Essex Right to Control http://www.essex.gov.uk/Health-Social-Care/Care-for-Adults/Staying-Independent/Right-to-Control/Pages/Default.aspx

Lights, Camera, Action – Promoting disability equality in the public sector http://www.equalityhumanrights.com/uploaded_files/EqualityAct/PSED/radar-ded_acc.pdf

Involvement and co-production – Office for Disability Issues http://odi.dwp.gov.uk/involving-disabled-people/co-production.php