In this powerful speech in the Lords, Baroness Jane Campbell (who is a DR UK Ambassador) says why we should invest in independent living and empowerment.
Jane's speech – health creation
[DRAFT TWO]
My Lords, I would like to thank my noble friend, Lord Crisp for tabling this important and timely debate. Over the years my noble friend and I have often exchanged ideas on what I like to refer to, as "the empowerment model of health and social care well-being". It was this model that drove my leadership of the Charities, the National Centre for Independent Living, and then the Social Care Institute of Excellence, which I was privileged to be a founding Chair from 2001 to 2006.
Like Michael Marmot, in his book ‘The Health Gap’ (2015), I attribute differential health status to the extent of disempowerment and lack of control disabled people have over their lives. Marmot writes
… “tackling disempowerment is crucial for improving health and improving health equity. I think of disempowerment in three ways: material, psychosocial and political.
Material; – If you have too little money to feed yourself or your family, you cannot be empowered.”
Psychosocial; if you do not have control over your life it is stressful and leads to greater risk of mental and physical illness…
Political if you have no voice – for you, your community and indeed your country your the above circumstances continue.
My Lords, I believe it is more important to change the conditions in which people live – empower people – than simply address their immediate medical condition or care need. In the mid-90s I was privileged to run the National Centre for Independent Living. We used the empowerment model, to enable better health and well-being of disabled people reliant on state health and social care support. Our sole aim was to support them move from dependency-creating care provision, to independent living support provision.
NCIL was born out of the Community Care (Direct Payments) Act. Conceived and led by disabled people, the Act gave disabled people direct financial control over their social care support monies. The resistance from the traditional care providers was extreme, but with the help of some enlightened Directors of Social Services, Civil Servants and politicians, power shifted from the professional knows best, to the client knows better.
This could not have been achieved without the national infrastructure of local Centres for Independent Living. These local centres are largely run and controlled by disabled people, who provide, advocacy, advice, training, volunteering opportunities and jobs. I saw people who society had written off, break out of residential care, long stay hospital wards or their parents’ home and begin to live as rounded human beings. Relationships were formed, families were made and children born.
Things have rightly progressed over the years and now people with learning disabilities are also demanding the same right to choice and control over the way their support is delivered and experienced. So too are people with enduring mental health challenges, they talk of the The recovery empowerment model which does not mean more psychiatrists and more beds. Instead, they demand greater focus on life chances rather than treatment. This would give people the empowerment and voice that would importantly push a culture shift in the provision of mental health services.
My Lords, there is rich evidence that the independent living movement drove a culture shift that has led to a wider personalisation approach. And now at last health, is beginning to catch on with Personal Health Budgets.
But my Lords, it is really baffling me why, when the economy shrank, did local and national politicians decide to cut first, the Independent Living infrastructure that is necessary for progressive personalisation? I remember campaigning for a National independent living scheme which became the Independent Living Fund over 21 years ago. It was the epitome of the independent living empowerment approach, yet again it was sadly cast aside, without a government strategy to ensure its principle and outcomes were not lost when transferred to local authorities.
My Lords, independent living, pays for itself again and again. It is well evidenced that people who live independently in the community, with the right support, lead healthier and more cost-effective lives. It is the antithesis of health and well-being creation. The professionals enable, facilitate and inform. The service user learns, takes control and lives - not just survives.
My Lords, I congratulate the Government on the Chancellor’s spending review statement yesterday, allowing local authorities to levy a new social care precept of up to 2 per cent on council tax. But my Lords, a word of caution. Let this £2 billion investment be directed at social care which enables the service user to become an active empowered citizen, not maintaining traditional dependency-creating services.
Winston Churchill said of scientists they need to be “‘on tap’ not ‘on top’: we need their expertise, but for God’s sake don’t let them run the country!” I would argue that the same applies to health and social care professionals. We need their expertise, but for God’s sake don’t let them run people’s lives.
My Lords, I suggest legislators, policymakers, economists and politicians seriously reach out to disabled people and let us be part of the solution, not the problem to be dealt with.