Response from Ann Macfarlane, OBE

Many Councillors will not know that the Independent Living Scheme (direct payments) in Kingston did not just happen but was borne out of the sheer desperation of two disabled people.   Both were in very different situations but neither could carry on living life through the support provided by relatives, volunteers and the community nursing service.  Back in 1987 Jane Campbell, now a Baroness in the House of Lords, and Ann Macfarlane OBE, made the decision to take control of their lives.  In order to gain this control they sought a meeting with the then Director of Social Services, Angela Julia.  It was a wet day, we had to rely on a volunteer driver, and as we journeyed from Surbiton to the Guildhall in Kingston we were determined to get a positive result.  As is often the case for disabled people, if we request something, we usually get landed with a job and this meeting proved no exception.   We asked for cash for care.   At that time, Direct Payments were illegal and the only way we would receive Council money was through a third party organisation.  Angela Julia asked Jane and me to go away and write the policy document and to write our own care plans.   It took Jane and me six months to come up with the Policy.   On the night that Angela Julia presented it to Council, it went through without a single alteration.  Jane was present at the meeting to hear the positive outcome.

Over twenty-two years have passed since the adoption of that Policy and Jane and I, along with many disabled people from all over the UK, worked tirelessly to ensure that legislation was brought onto the statute books.   This was achieved when the 1996 Community Care (Direct Payments) Act was passed and Direct Payments became legal in 1997.   I’m writing all this because not only does it tell us that Kingston Council were ahead of their time, it epitomises the struggle of disabled people to achieve control over their lives and shows that things will only change and improve if we take the lead.  And this was only the beginning as Jane and I had to pioneer the Independent Living Scheme for Kingston and the Council was able to take many of the accolades that followed because of our work.   Government looked to Kingston for a steer and Jane and I made many journeys to Government Departments and to other Local Authorities to advise them on how to set up Independent Living Schemes using Direct Payments, mostly expecting us to undertake this work free of charge.   Jane and I were clear that Direct Payments should be available to all disabled people and later the legislation covered other Groups, including older people.

During the nineties there was no means-testing for social care services and those receiving the Disability Living Allowance were expected to contribute a percentage of the care component.   In 2005 the council introduced means testing for social care charges but stopped short of introducing a grossly unfair system whereby service users have to pay uncapped charges of up to 100% of their disposable income. However, at that time, several of us strongly resisted the intrusiveness of means testing and warned that we were on a slippery slope; the current proposals demonstrate the validity of this warning.   No one, least of all disabled people, should have to fight over years for the right to life.  As I look back through my files I note our campaign thinking and documentation on charging for social care carry similar messages.

I managed to break free from institutionalisation back in the late 1970’s when it was virtually unheard of for any disabled person entering a residential setting to return to the community.   I made it and have, after some really difficult years when social care was non-existent, come to enjoy life through employing personal assistants, being in paid employment, volunteering in the local community and contributing to society generally.

Now, in 2011, when Government is expecting Councils to get increased numbers of disabled people onto Personal Budgets, we are faced with a severe ‘health warning’.  Our Council has written to those of us who receive social care support stating that it has a 24% deficit in its budget and that we cannot expect this financial support to come from the public purse.   So we are being told that we are a burden to society, that we are of little or no value, and that those of us who can contribute more financially, must do so in order to assist additional people who require help and who cannot afford to pay.   At present I definitely need help as I am suffering from a split personality.  On the one hand I’m told that my work demands recognition and on the other I’m told I am of no use and a burden to society and the local community.  If I feel this then so must those who do not have their voices heard.

As Baroness Jane Campbell has stated, we who are disabled and, in my case, an older person, have not chosen to be disabled or older. It is not a lifestyle choice.  I am not going to apologise for living too long and I am determined that all the work I have put in over the years to free us from oppression, discrimination and institutionalisation will not be eroded further.   It must be remembered that in every aspect of our lives disabled people continue to experience discrimination and oppression.

But we do have to ask ‘why is it that disabled people have to struggle and beg and work incredibly hard to remain alive?’  If people have a right to health care that is free at the point of delivery, why is it that one particular group of people should be denied social care free at the point of delivery as it is just as vital to a healthy life. None of us know when we are going to be ill or need some sort of health input.  So it is that none of us know when we might need social care.   Both are vitally important to life.

Leaders of Kingston Council, I urge and challenge you to:

  1. Think of your own lives and how you would respond to these huge and unfair charges.  Some of you, I know, engage in a full life, able to freely access your home, enjoying a second home, holidaying abroad, and accessing a full range of transport, employment opportunities, leisure activities, socialising and enjoying relationships.
  2. Tell us the real cost of this consultation on charging for social care services (not forgetting to add in a figure for stress and anxiety for those who receive social care support) and tell us what the Council expects to gain financially from the proposal to increase charges to disabled people and how this figure was determined.
  3. Provide a full list of disability related costs that accrue in order to facilitate daily living as a disabled person.  This could be done at a Council meeting as I think you will be surprised at the real costs.
  4. Finally, write a detailed list of all the services and support that have been examined where cuts can be made that apply to all sections of the community where people have choices and list those savings that can be made within the Council’s own services and structures.

I feel sure that solutions will be found to the economic deficit, just as disabled people have to work at solutions in order to function within their own, often inaccessible, home and in the community where countless barriers exist.

Disabled people have done much to improve the quality of life for all in Kingston and we should feel proud of what we have achieved over many years.   Please don’t sweep all our hard won achievements away with the stroke of a pen.