Save Self-Advocacy!! #NoVoice

The Department of Health has signalled that it is likely to end funding for the National Forum of People with Learning Disabilities and the National Valuing Families Forum from March 2017. This announcement has prompted very real fears that the voices of people with learning disabilities will not be heard.

As it stands, it looks as if just two years after the publication of “No Voice Unheard, No Rights Ignored”, the voices of people with learning disabilities will effectively be silenced at the national level. Cuts to self-advocacy come at a time when our research found that self-advocacy offers vital support to people with learning disabilities, particularly in a time of austerity.

As part of our research, people with learning disabilities told us why self-advocacy matters to them:

  • ‘Campaigning for things that we are passionate about fighting for our rights’;
  • ‘Provides help and advice for people who are having problems with their life’;
  • ‘Helping other people with learning disabilities to speak up’.
  • ‘Being a self advocate has given me more confidence at
  • meeting new people and helped me get a job and also live on my own’;
  • ‘Coming to my advocacy group has helped be to have more confidence in my ability to live on my own, and be a part of the community’

We found that:

  • Often people with learning disabilities are the people best placed to support decision making in the lives of other people with learning disabilities;
  • Relatives, friends and supporters of people with learning disabilities felt equally supported by self-advocacy groups;
  • Self-advocacy groups take many forms. Some are based in services, others in residential homes and many others in the community;
  • Self-advocacy promotes resilience of people with learning disabilities and their families;
  • The cuts have led to the closure of numerous local self-advocacy groups which leaves many people with learning disabilities and their families isolated and lonely in the community;
  • Many self-advocacy groups have expertise around person centred planning, community living and employment that service providers and policy makers are learning from.

Our message to government is that:

Self-advocacy groups play a crucial role in the lives of people with learning disabilities and that funding to self-advocacy services should not be cut.

Follow the campaign to save self-advocacy #novoice.

#NoVoice

The government has published its long awaited Green Paper on work health and disability, and as one Twitter user commented with deep irony, ‘try to contain your enthusiasm’. But what are the implications for people with learning disabilities?

This reaction to the publication of the green paper is hardly surprising when you know that the UK’s disability employment gap stands at about 32% with less than half of disabled people in work - 48%. This compares with 80% of their non-disabled peers who are in work. If you are a person with a learning disability, your chances of being in paid work are woefully low – about 5.8%. This figure has changed little over the last twenty years, but shockingly, in realm terms, it is currently falling.


Successive governments have failed to address the disability employment gap. The hope, then, is that the publication of the consultation paper will re-ignite the debate about disability, health and employment. There is a desperate need to talk about work in the lives of disabled people. Many people with learning disabilities can work and want to work. An employment rate of 5.8% represents a scandal – it represents the exclusion of people with learning disabilities from the many benefits of working life: financial wellbeing, health and community inclusion. But not all disabled people are able to work and so access to work can never be the only route for people to feel secure, financially and emotionally, and included in society.

At the same time as the government hails work as the route out of poverty and marginlisation for disabled people, the support available for them to find work is under threat.

Add into the disability-employment mix cuts to Access to Work and cuts to specialist employment advisers and the future looks bleak.

But it shouldn’t be.

We know that, with the right support, many people with learning disabilities can work. We also know that this support needs to start early and that young people with learning disabilities and their families and allies need good support to make aspirations around employment a reality.

Take for example, Charlie’s story. Charlie was in his late forties when he got his first job, but he has been happily working in that job for the last ten years.

Case Study: Charlie’s Story

Charlie is in his fifties and lives with his wife in a city in the south of England. He enjoys local amateur dramatics, runs and dances. Charlie works for the city council in their meal’s service. The meals service provides hot lunches for people in the city who are in need of their support. Charlie works every day and does a range of tasks during the week including re-cycling, shredding, scanning, filing, cleaning and making teas and coffees. When Charlie applied for the job he was offered a ‘working interview’ where he tried out tasks in order to secure the post. He also had the support of a job coach when he started work. The job coach worked with Charlie to make a checklist for daily and weekly tasks that Charlie uses on a day-to-day basis.

So following our research, our message to government is to do what works:

What works

  • The Department for Education should strengthen employment as a strand within the transition review for young people with Special Educational Need and Disability (SEND) aged 14 - with a requirement to engage with supported employment providers which continues at every subsequent review of the Education, Health and Care Plans (EHC);
  • The Department for Education should allow for the continuation of EHC plans for young people to twenty-five in employment, but not in education;
  • The government should promote the principles and processes of Supported Employment as the key to getting more people with a learning disability into work
  • The government should promote a national register of job coaches backed by emerging quality standards to support training and development;
  • Each local authority should be required to provide opportunities for supported internships linked to good quality job coaching for people with learning disabilities in their area;
  • Each local authority should be required to develop pathways to employment for people with learning disabilities linked to outcomes based commissioning;
  • Employment support should be included as an outcome in personal budget planning.

Written by members of the Humanactivism.org team Katherine Runswick-Cole*, Dan Goodley ** & Keith Bates***

* Manchester Metropolitan University, **The University of Sheffield, ***Mutually Inclusive Partnerships

Save Self-Advocacy!

The last 50 years has witnessed the global growth of the self-advocacy movement. This is a political movement set up by people with learning disabilities so that they can collectively agitate for their rights.

Self-advocacy is an international movement with incredible potential to promote the aspirations of people with learning disabilities. This movement has helped push politicians and policy makers to ratify the United Nations Convention on the Rights of Disabled Persons.

Our research has uncovered worrying decreases in the amount of funding that self-advocacy groups can access and has collected many stories of groups folding in a time of austerity. We seek to raise the profile of the importance of self-advocacy groups.

Please visit our Help and Support pages to learn about how important self-advocacy is to people with learning disabilities and their families.

Have you got the capacity to understand (the) mental capacity (act)?

The Mental Capacity Act (MCA) is an important piece of legislation that can help people with learning disabilities to live good lives. Recently, there has been a lot of debate about its potential. But what about is potential use in the lives of people with learning disabilities?

The Mental Capacity Act is designed to protect and empower individuals who may lack the mental capacity to make their own decisions about their care and treatment. It is a law that applies to individuals aged 16 and over. Examples of people who may lack capacity include those with dementia; a severe learning disability; a brain injury; a mental health condition; a stroke and unconsciousness caused by an anaesthetic or sudden accident.

However, just because a person has one of these conditions does not necessarily mean they lack the capacity to make a specific decision. Someone can lack capacity to make some decisions (for example, to decide on complex financial issues) but still have the capacity to make other decisions (for example, to decide what items to buy at the local shop).

Our research has found that:

  • The legislation is difficult for most people to understand;
  • Under the MCA, everyone is required to act in the 'best interests' of the person covered by the act;
  • In order to do this, people have to show why they have made the decisions they have;
  • We think a good way of showing how decisions are being made is a circle of support;
  • A circle of support comes together to support a person with learning disabilities;
  • The records of the decisions made in in Circle meetings are a way of showing how decisions have been made in the person's 'best interest';
  • Circles of support are an important way of enabling disabled people to navigate services and and to live a good life;

We are of the opinion that the MCA can help rather than hinder people with learning disabilities. Clearly, any piece of legislation that puts people with learning disabilities at the centre of decision making has to be applauded.

That said, we also need to be mindful of how we practically respond to the MCA. One starting point might be to consider Mental Capacity as a distributed phenomenon: our capacities are always influenced by and mediated through the relationships that we have in our lives. Circles of support are just means of promoting such relationships.