Joint open letter to the Department of Health and Social Care

Letter from Disabled People’s Organisations to urge that our organisations are actively involved in the Government’s work-stream to look at social care for working age Disabled people.

Letter to Caroline Dinenage MP (Download our letter)

Caroline Dinenage
Minister of State
Department of Health and Social Care
Richmond House
79 Whitehall
London, SW1A 2NS

Cc Jeremy Hunt, Secretary of State for Health and Social Care


Dear Minister,

We are writing to urge that Disabled people’s own organisations (DPOs) are actively involved in the Government’s work-stream to look at social care for working age Disabled people. Our organisations, run and controlled by Disabled people are able to provide valuable insights into the lived experience of social care users, including an understanding of key barriers and identification of potential solutions. There is an important and fundamental difference between the national charities who speak for Disabled people and DPOs where we speak for ourselves.

We support concerns raised by Baroness Jane Campbell that a round-table has been organised in Parliament on 28 February to which no single DPO has been invited and would ask for assurances that this exclusion will be rectified going forwards, with meaningful and accessible involvement of Disabled people and our organisations embedded within the work-stream.

Our involvement would contribute towards fulfilling recommendations from the Concluding Observations of the UN Committee on the Rights of Persons with Disabilities published in August 2017 calling on the UK Government to ensure “close collaboration” with Disabled People’s Organisations (DPOs). In particular, recommendation 45 (b) calls for “close consultation” with DPOs to address “appropriate strategies in the area of social support and living independently” and recommendation 45 (d) calls for a comprehensive plan, “developed in close collaboration” with DPOs aimed at developing independent living.

We look forward to hearing from you.

Yours sincerely,

Andrew Lee, Director People First
Angie Carmichael, Director Wiltshire People First
Becki Meakin, General Manager Shaping Our Lives
Caroline Collier, CEO Inclusion Barnet
Cathy Wintersgill, Connect in the North
Colin Bennett
David Buxton, CE Action on Disability
David Malins, Aspie Link patron & cofounder
David Strong, Director Disability Advice Service Lambeth
Emily Morton, Disability Sheffield
George Saunders, Norwich Access Group
Hana Smeeth, Hammersmith and Fulham Mencap
John Healy, Chair Brent Advocacy Concerns
Jon Abrams, One Place East
Joyce Kallevik, Director Wish
Lauren Robinson, Darlington Association on Disability
Linda Burnip, Disabled People Against Cuts
Lucy Byrne, CE Richmond Aid
Lyla Adwan-Kamara, CEO Merton Centre for Independent Living
Marion Fallon, DPAC & Unite Community
Mark Baggley, Choices and Rights Disability Coalition
Mark Harrison, CEO Equal Lives
Martin Symons, Chair Norwich Independent Living Group
Mo Stewart, Independent Disability Studies Researcher
Molly Gillespie, Grapevine Coventry and Warwickshire
Nigel Long, CEO Harrow Association of Disabled People
Our Vision Our Future
Pat Onions, Pat’s Petition
Patrick Lynch
Peter Gay, Hammersmith and Fulham Coalition Against Cuts
Sean McGovern, TUC General Council Rep for Disabled People
Sorena Francis, More Than 1 Forum
Tracey Lazard: CEO Inclusion London
Val Fone, Action and Rights of Disabled People
Zeenat Jeewa, Joint CEO Asian People’s Disability Alliance



Reply from Caroline Dinenage MP (Download the reply from Caroline Dinenage MP)

From Caroline Dinenage Mp
Minister of State for Care
39 Victoria Street
020 7210 4850

11th May 2018

Dear Ms Lazard,

Thank you for your letter of 4 April, co-signed by a number of others, about disabled people’s organisations. I have been asked to reply.

We recognise the valuable insight that disabled people are able to provide into the lived experience of recipients of social care support. The Roundtable meeting attended by Baroness Campbell was a useful starting point in what will be an ongoing process of engagement on this critical issue. It was particutarly helpful in identifying some of the major issues that will require further consideration.

Since the Roundtable meeting, officials have met a range of people, including representatives of Disability Rights UK, people with lived experience and national charities, and further discussions are planned.

It is right that these conversations inform the direction we take. We are at relatively early stage for this piece of work, which will complement the Green Paper. We will set out our plans in due course.

I hope this reply is helpful. I would be grateful if you could share it with your co-signatories.