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Social Care Reform; improving Disabled people’s lives

23 June 2021

The biggest goal of any social care reform should be to improve the lives of people who draw on it. We are a coalition of organisations led by Disabled people and supported by allies. We are the direct voices of Disabled people who draw on social care support to lead our lives. We want Disabled people to be central to shaping Government reforms to social care.

These are the basic rights we want the Government to adhere to in the reform of social care:

  • Disabled people should have the right to thrive, not just survive.
  • The role of care and support in today’s society must be to provide care, support and connections that enable people to live the life we choose within their community.
  • Social care must provide support to people to live, learn, work, participate and connect, on an equal basis with others.
  • Reform must be fully informed by the experiences, expectations and aspirations of Disabled People who draw on it.

Principles for reform:

  1. Any reform should implement the UK’s obligations under the UN Convention on the Rights of Persons with Disabilities to ensure Disabled people’s right to live independently and be included in the community. This means people should have a real choice of where and with whom to live, and have all the necessary support provided to live in the communityp
  2. Social care must support the choice, control and inclusion of the people who draw on it. Processes must allow the voice of Disabled People to be heard and their choices respected. It must enable people to achieve their potential and have equal life chances to others.
  3. Social care support should enable people to live an ordinary life. High quality personal care is essential as well as support to get out and about, build connections with others and enjoy open spaces.
  4. People should receive and experience social care support based on their needs not on geography, impairment, age, race, ethnicity, gender or income.    
  5. Relying on social care support must not put people at risk of increased poverty.
  6. People, especially those with complex support needs, should have access to good quality support in the community. Reform must accelerate the deinstitutionalisation of care and support provision towards more responsive, flexible, varied and self-directed support within the community.

Making change happen

To make change happen there must be:

Nothing about us without us

Changes that led to radical improvements for those who use social care, such as person-centred planning, personal budgets and direct payments were developed by Disabled people ourselves.  The viability of any reform proposals and their likely success should be judged by those of us who draw on social care.  Disabled People’s Organisations have already developed solutions which should be considered[1]. This is why we urge the government to engage directly with people who use social care and organisations that are led by Disabled people.

Long term funding

People should receive the care and support we need to lead full lives. Social care must be put on the same footing as the NHS, free at the point of use and funded through general taxation.  There must be a long term plan for social care, as there is for the NHS. Funding must be based on robust evidence of current and future needs and provide a sustainable solution. 

Funding reform must ensure that the experience of people who draw on social care continues to improve. In line with expectations laid out by the UNCRPD the Government should take concrete and targeted action to ensure year on year improvements in the achievement of independent living.

Developing good social care infrastructure is an investment, not only in the potential and future of people who need the support, but in good, green jobs and wider economic prosperity.   A vibrant, diverse and innovative social care sector could play a vital role in our economic recovery after the Covid-19 pandemic. 

Reform of the law to give more power to Disabled people and support inclusion

The Care Act has failed Disabled people. It has not prevented severe cuts to support, or the imposition of needless red-tape on those using direct payments. People are denied the power to make decisions about their own needs, support and wellbeing, with councils often making life-changing decisions with very little accountability and with few opportunities for decisions to be challenged.  The law must be strengthened, in line with UNCRPD[2].    

  • to guarantee Disabled people the right to choose where we live and who we can live with
  • to get the care and support we need to lead full lives
  • to be supported to  live in the community
  • to access community activities like everybody else.

Funding to meet needs and reduce waste

It is critically important to ensure that money is spent on services that Disabled people of all ages want and need – services that move the UK forward towards standards set out in the UNCRPD. Currently, money is often wasted on services that do not support choice, control and inclusion[3]. This must stop. The reform must put maximum available resources into direct support, allowing people to control their support and have real choice and power. There should be reductions in money spent on administration, decision-making and rationing processes.

Understanding current and future needs

When the NHS does not have enough resources to meet the needs it encounters we are able to see this through the existence of waiting lists and then policymakers can respond accordingly. There is no similar measure of shortages in social care. Local authorities should record the needs that they are currently unable to meet to provide similar information. This will make it possible for the Government to work towards filling the gap.

Abolish charges for social care

Social care should be free at the point of use. It is completely unacceptable that people on means-tested benefits have to pay a significant proportion of their already small income for social care support. The system is particularly unfair towards young Disabled People with high support needs. Reforms must address this problem and stop pushing people into poverty. Charging for social care should end[4].

Enabling Disabled people to innovative

Disabled people often feel as if care is done to us and decisions are made for us. Professionals do not always view themselves as enablers and often regard providing care and support as the end goal. This can lead to high levels of bureaucracy, lack of trust of Disabled people to make ‘good’ decisions, and rigid frameworks with limited options and over the top monitoring systems. 

The experience of people who use direct payments is a particularly troubling example of this. Over the past few years, the bureaucratic burden and increasingly rigid requirements imposed by local authorities have left people with additional responsibilities. At the same time, these have removed the freedom and control associated with direct payments.  Innovation is not possible without choice and control and therefore reform must promote a radical change in the approach, ensuring that restrictions are removed so that people are truly able to self-direct their support.

Sign the statement

Signed by

Disability Rights UK

Inclusion London

Reclaiming our Futures Alliance

Bristol Reclaiming Independent Living - BRIL

Shaping Our Lives

Social Care Futures

Valerie Stanfield - BRIL

Valerie Wood

Martin Stevens OBE - Disability Rights UK

Laura S - Disability Rights UK

Simon Arthur Shropshire Peer Counselling & Advocacy Service

Sophie Fournel - Centre for Independent Living Kent

Mark Anthony Bastiani

Aodhan Fagan

Cara Molyneux - Social Justice Research

Michael Thackray

Mark Baggley - Choices and Rights Disability Coalition (Hull and East Riding)

Mo Stewart - Centre for Welfare Reform

Leslie Billy - Viewpoint

Jennie Sapherson - Leeds Disability Hub, Leeds Involving People

Jonathan Waddington-Jones - Access Dorset

Richard Boggie - Difference North East

Mahmudur Rahman - Deaf Rhinos

Laura Wheeldon

Helen Rowlands - Cheshire Disabled People Against Cuts (DPAC)

National Survivor User Network (NSUN)

Chris Lloyd

Lucy Byrne - Richmond AID

Clare Burgess - Surrey Coalition of Disabled People

Marian Redding - Patient

George Mclnerney - National Autistic Society

George Mac - South Glos Aspies

Jade Marshall - Outsiders

Mandy-Jayne Lace - Mandy-Jayne Lace Person Centred Coaching

Jane Johnson MBE - disAbility Cornwall & Isle of Scilly

Darren - Outsiders

Richard Ramsbotham

Aless McCann

Sandra Hill - Speakeasy N.O.W

Chris Rowland

Mike Llywelyn Cox

Dr Colin Cameron - Shaping Our Lives

Chris Kilby

Keith Hall - Inv

Mark Nicholson - Equality Together

Joy Fisher - Leeds Alliance of Service Experts

Emma Louise Yates

Dominic Ellison - WECIL (West of England Centre for Inclusive Living)

David Rolph - Think Like A Pirate

John Williams - Stop Invisible Impairment Discrimination

Ruth Middleton

Liz Trethewey - Eastbourne Access Group

Jim D Smith - Dial in Worcestershire

Laura J Welti - Bristol Disability Equality Forum

Laura J Welti

Premniti Patricia Carr - Camden Disability Action

Waltraud Pospischil - Arkbound Foundation

Ken and Tracy Mcclymont - Dudley Centre for Inclusive Living

Sandra Totterdell

Jonathan Bell - MIND

Lyn Venables

Dean

Ben Reed - Equal Lives

Liz Howard

Madeleine Kingston - Labour Disabilities Group

Laura Tanner

Sarah Bird

Christine Tongue - Labour Disability Group

Catherine Goodall

Anthony Hagger - Hull Easy CLP

Wanda Lozinska - Labour Disabilities Group

Colin Slasberg - Independent Researcher and Consultant in Social Care

Debashis De

Katy Etherington - PA Pool

Jenny Almeida - Labour Disability Group

Inclusion Barnet

Sue Elsegood - Metro-GAD (Greenwich Association of Disabled People

Nailia - Myself

Nile Nugnez - Individual

Tony Mackrell - Individual

Susan Doyle - Individual

J Schnell - Individual

Mrs E James - My family

John Miller - Individual

Cherry Sewell - Individual

Donald Stewart - Individual

Mrs Louise Eileen Blackburn - Individual

Rosemary Nicholson - Visually Impaired in Camden

Martin Cain - Hemkhajit Foundation, London

Michael John Singleton - Individual

Catherine O'Brien - Individual

William Case CF - CEO Your support Matters CIC

Wendy Beverley - Individual

Colin Beverley - Individual

Dr Victoria Armstrong - Disability North

Liz Silver - National Federation of the Blind Nottingham Branch

Jordan Smith - Individual

Mira Glavardanov - Individual

Laine Michael - Carer

Paul Kershaw - Chair Unite LE1111

Theresa Mackey - Individual

Patricia Johnstone - Individual

Deb McCarthy - Speakeasy NOW

Pat Ayinde - Individual

Janet Leifer - Barnet Alliance for Public Services

Paul White - Individual

Catherine Hale - Chronic Illness Inclusion

Mary Meadows - Individual

Jackie Keogh - Individual

Sue Somers - Individual

Caroline Powls - Unison

Beverly Turner - Individual

Chris - Individual

Annie Fergusson - Family carer

Zoe Tracey - Disabled Individual

Nicola Miller - Parent Carer

Giselle - Adult Social Care Warriors

Jessica Bricknell - Individual

Caroline Collier - Inclusion Barnet

Cathy Merriman - Dial South Worcestershire

Jamie Renton - Action Disability Kensington and Chelsea

Eleni Chambers - Shaping Our Lives/NSUN

Emily Morton - Disability Sheffield

Sandie Burns - Disability Peterborough

Jillian Mcintyre - Individual

Michael Turner - Merton Centre for Independent Living

John Siddique - Hackney People First

Matt Stabb - Individual

Paul Hawkins - Co-Chair of Inclusion London

Tracey Jannaway - Independent Living Alternatives

James Page - Individual

Sandra Berry - Support and Advocacy for MS (Community Interest Company)

Ray Stonehill - Support & Advocacy for MS, CIC

John Webster - Carer

Gail McGarvey - Individual

Nigel Long - Action Disability Training & Consulting

Kelly Woolley - Thurrock Center for Independent Living

Leonore Sheldon - Carer for a disabled person

Mary White - Enfield Disability Action

Penny Ledger - Disability Network Hounslow

Heather Davidson - The Greater Manchester Coalition of Disabled People

Pete Marshall - Individual

M Lynes - Shaping Our Lives

Eileen Brunst - Individual

Lorraine Webster - Individual

Kay H Trujillo - Individual

Melanie Close - Disability Equality (NW) Ltd

Ann Macfarlane - Kingston Centre for Independent Living

Linda Burnip - Disabled People Against Cuts

Brian Gaff - Kingston upon Thames Talking Newspaper

Esther Mmbago -Richmond AID

Helen Green - Kingston Centre for Independent Living

Dr Julie Magnus - Individual

Kambiz Fakhrai - Individual

Alison Rich - The Eleanor Group

Jacquie Stone - Individual

Julia Robbins - Individual

Rona Topaz - Individual

Laura Kearon - Individual

Len Rowland - KCIL

Melanie Massie - Individual

Janina C Konieczna - Individual

Janette Evans - London Renters Union, Disability Justice Caucus

Bob Ellard - DPAC Steering Group Member and family carer

Roxanne Steel - Individual

Cara Gay Miller-May - Individual and Member of DAN (Disabled People's Direct Action Network UK)

Karen Grimes - Enfield Disability Action

Tracey Anang - Enfield Disability Action

Andrew Stuart - Individual

Marika Thorogood - Individual / Carer

Greg Ryan - Individual

Michelle Kitchen - Individual

Gillie Ivory - Individual

Karen Smith - Individual

Mrs V Kotecha - Individual

Gemma Cook - Individual

Jane Young - Disabled Advocate

Tracy Saffet - Adult Social Care Warriors

Mandy Whalley - Carer

Kim Roper - individual

Sajna Talukdar - Individual

Jeannette Harding - Individual

Chris Selway - Spinal Injuries Association

Rachel Dykins - Mind in Kingston

The Members Representative Co-Chairs Learning Disability England

Bryony Jayne Meteyard - Ignite Me Workshop Theatre

Ben McCay - My Life My Choice

Mike Steel - Individual

Janet Mearns - Individual

Nicola Zielinski - Rescare

Helen Cherry - Individual

Paine Wallid

Sarifa Patel - Disability Rep Forum

Patricia Maclean - Individual

Louise Mckiernan - Birmingham Disability Resource Centre

Mary Reed - Wiltshire Centre For Independent Living

Alexandra Cowan - Individual

Dr Pippa Maslin - Merton Centre for Independent Living

Giselle - Adult Social Care Warriors

Eleanor Lisney - Sisters of Frida

Lisa Benn - Individual

Rebecca Smicle - Independent Lives

Michael Singleton - Individual

Anna Webb - Individual

Lindsay Bush - NFBUK

Victor Jackson - NFBUK

Hilary Adolphson - NFBUK

Mary Naylor - NFBUK

Karen Turner - Parent and School Governor

Joy Palmer - Camden Disability Action Trustee

Sheila M. Foster - National Federation of the Blind, Leeds & District Branch

Helen Rowlands - Cheshire Disabled People Against Cuts

Cllr Dorothy Jump - Cheshire Disabled People Against Cuts

Gary Saunders - Individual

Denise Mellows - Individual

Edouard J Meulbrouclk - Individual

Tim Cooper - (Chief Executive) United Response

Gerry Zarb - Individual

Dr John Astbury - No

Kerry Rooney - Parent of a person with disabilities

Patrick Rooney - Person with disabilities

Speakup Committee - Speakup Self Advocacy

Damaris Wollen - Individual

Andrew Day - Individual

Valerie Dean - Individual

Aysegul Cinar - Local Account Group

Dr Alice Maynard CBE - Future Inclusion

Mike Smith - CEO Real

Lise - Capable Creatures

Hasmukh Mehta - Individual Shaping Our Lives

Alex Hendra - Individual

Maggie Beirne - Ealing Reclaim Social Care Action Group (ERSCAG)

Wendy Starkie - ERSCAG

Erika Griffiths - Individua

Nathan Lee Davies - #SaveWILG

Mike Llywelyn Cox - Individual

Mrs Janet Ormerod- Individual

Christina Young - Individual

Mark Harrison - Reclaiming Our Futures Alliance (ROFA)

Helen Jones - York Disability Rights Forum

Lynne Turnbull - Disability Positive (the new name for Cheshire Centre for Independent Living)

Mel Close - Disability Equality (NW) Ltd

David Anderson - Individual

Sandra Wyman - Leeds NE Labour Party

Sarifa Patel - Disability Rep Forum

Wendy Fell - Disabled People Against Cuts

Merry Cross Berks - DPAC

Waltraud Pospischil - BRIL

Gerard Smyth - Labour party

Elvira Farrell - Social Care

Janet Stubbs - Disabled Labour

Daniel Potter - Individual

Paul Morris - Individual

Nicki Myers - DPAC Cambs and Essex

Dominic Ellison - WECIL

Michelle Simpson - Deafness Support Network

Averil Goodier - Disability Information Bureau

Jeffrey Till CWU - London Regional Disability Lead

Ian Loynes (CEO) - SPECTRUM CIL

Mark Baggley - Choices and Rights Disability Coalition

Heulwen Baworowska - Individual

Fiona Martin - Active Independence

Chris Martin - Individual

Mrs M. Annette Adams - Glorious Creations

Ian Malcolm-Walker - Individual

Dana Cohen - Individual

Neana Lawson - Nottinghamshire Disabled People’s Movement

Neana Lawson - Individual

James Watson-O'Neill - SignHealth

Jean Cheeseman - Individual

Richard Lloyd-Jones - Individual

Amanda Sadler Mental Health North Dorset Help and Peer Support

Hon. General Secretary NFBUK

Deborah Bennett - Individual

Beverley Golding - Individual

Mollie Cooke - Individual

Alicia Boden - Individual

Charlotte Monnelly - Individual

Sean Hazlewood - Individual

Kathleen P Tiller - Individual 

G D Birtwistle - Individual

John E Trinder - Individual

Kirsteen Macdonald - Individual

B. Wright - Individual

Daniella - Foster As a Carer

Steve Strong - Individual

Penelope Driscoll - Individual

Catherine O'Brien - Individual

Richard Hobbins - Individual

Rona Topaz - Individual

Tony Mackrell - Individual

Joyce Wright - Individual

Ash Relative - Individual

Pete Family - Individual

Clem Family - Individual

Shirley Kelly - Individual

Tony Kelly - Individual

Angela Woollard - Individual

Michele Scattergood - Breakthrough UK

Marion - Individual

Philip Mien - Individual

Ian Mahoney - Individual

Siv White - Individual

John Boyle - Individual

Janette Waddingham - Individual

Deborah Antcliff - Individual

Dianna Gunby - Individual

Dr Richard Light - Individual

David Scully - Individual

Michael Avis - Individual

Julie - Individual

Sylvia - Parent

Dave Seager - Parent

Derek S - Individual

Karen S - Individual

Steven S - Individual

Jill Clare - Individual

Sue Williamson - Individual

Michael Avis - Individual

Delia Garrod - Individual

Liz Stopani - Individual

Katrine Whitaker - Individual

Nigel Bowness - Individual

Gillian Hudman - Swansea Hard of Hearing Group

Sally Rhodes - Individual

Michelle Munns - Parent

Alex Lyness-Brown - Individual

Steph Thewlis Chapman Wood - Individual

Elizabeth Innocent - Individual

Katy Murray - Individual

Barbara Booton - Active Independence

Rachel Knowles - Individual

Emma Bind - Individual

Sheree Beckingham - NARPO TVP Oxfordshire

Claire Glasman - WinVisible (women with visible & invisible disabilities)

Jacqui Hayward Gant - Individual

Sally-Anne Cohen - CWU

Sally-Anne Lanyon - Individual

Kimberley Sanders - Individual

Lauren Robinson - Darlington Association on Disability

Joyce Kallevik - Wish

Ian Penfold - Parent/Carer

D O'Beirne - Individual

Sian Lockwood - Community Catalysts

William Allan Green - Individual

Kathryn Newnham - Individual

Matthew Newnham - Individual

Sophie Newnham - Individual

Jamie Newnham - Individual

Mike Newnham - Individual

Susan Kirkman - Individual

Juliet Mountain - Shaw Trust Foundation

Susannah Sharp - Individual

Alison Tupling - Individual

Sarah Leadbetter - National Federation of the Blind of the UK

Sarah Leadbetter - THe Midlands branch of the NfB UK

Patrick Wood - Sheffield User Survivor Trainers (SUST)

David Laurence - Disability Law Service

Kathryn Bole - Suffolk Coalition of Disabled People

Edmar Jose Schimidt - Individual

Angie Bartoli - Vice Chair - British Association of Social Workers - England 

Sign the statement




[1] See for example Independent Living for the Future – a proposal developed by Reclaiming Our Futures Alliance - https://www.inclusionlondon.org.uk/wp-content/uploads/2019/06/NILSS_final.pdf

[2] Effectively this means incorporating article 19 of the UNCRPD into UK law.  The Equality and Human Rights Commission has developed a legal model which we believe should be implemented as part of the reform.  https://www.equalityhumanrights.com/en/publication-download/strengthening-right-independent-living 

[3] For example evidence of how people with learning disabilities and autism are treated in ATUs: Joint Committee on Human Rights (2019), The detention of children and young people with learning disabilities and/or autism

[4] The picture of how much individuals are asked to pay for their care is different in the UK nations, for example, personal care is free in Scotland.  Local authority charging policies also vary a lot, which leads to a post-code lottery.  For example, Hammersmith and Fulham Council in London does not charge for homecare at all.